Generated by Rank Math SEO, this is an llms.txt file designed to help LLMs better understand and index this website. # Hypertrophic Cardiomyopathy Association ## Sitemaps - [XML Sitemap](https://4hcm.org/sitemap_index.xml): Includes all crawlable and indexable pages. ## Posts - [Johns Hopkins All Children’s Hospital’s Hypertrophic Cardiomyopathy Program Named a Center of Excellence](https://4hcm.org/copy-of-press-release-june-19-2026-johns-hopkins-all-children-s-hospital-s-hypertrophic-cardiomyopathy-program-named-a-center-of-excellence/): Johns Hopkins All Children’s Hospital’s Hypertrophic Cardiomyopathy Program Named a Center of Excellence - [MaineHealth Program Earns National Recognition for Specialized Hypertrophic Cardiomyopathy Care](https://4hcm.org/press-release-june-18-2026-mainehealth-program-earns-national-recognition-for-specialized-hypertrophic-cardiomyopathy-care/): MaineHealth is the only HCMA-recognized Center of Excellence in Northern New England and one of just four programs in New England to receive the distinction. - [North Shore University Hospital Designated a Recognized Center of Excellence for Hypertrophic Cardiomyopathy](https://4hcm.org/press-release-may-21-2026-north-shore-university-hospital-designated-a-recognized-center-of-excellence-for-hypertrophic-myopat/): North Shore University Hospital designated a Recognized Center of Excellence for Hypertrophic Cardiomyopathy - [Cytokinetics Announces Positive Research Results.](https://4hcm.org/cytokinetics-announces-positive-topline-results-from-acacia-hcm-the-pivotal-phase-3-clinical-trial-of-aficamten-in-patients-with-non-obstructive-hypertrophic-cardiomyopathy/): Cytokinetics Announces Positive Topline Results from ACACIA-HCM, the Pivotal Phase 3 Clinical Trial of Aficamten in Patients with Non-Obstructive Hypertrophic Cardiomyopathy - [Press Release: Indiana Health Receives CEO Designation](https://4hcm.org/press-release-indiana-university-health-methodist-earns-hcma-center-of-excellence-designation-for-hypertrophic-cardiomyopathy-care/): 1.3 million Americans, likely over 13,000 in Indiana alone, suffer from hypertrophic cardiomyopathy (HCM), the most common genetic heart disease in the US. This, mainly inherited, condition causes the heart muscle to thicken and stiffen, making it very difficult to pump blood and leading to heart rhythm abnormalities. Yet, according to the National Institutes of Health, only 15% of affected individuals are even aware they have this condition. - [9 Years with Brandy – A Reflection](https://4hcm.org/9-years-with-brandy-a-reflection/): Lisa's original heart, now a teaching tool for others to see HCM in real time! - [Bristol Myers Squibb Announces Research Results.](https://4hcm.org/bristol-myers-squibb-announces-positive-topline-results-from-phase-3-scout-hcm-trial-evaluating-camzyos-mavacamten-in-adolescents-with-symptomatic-obstructive-hypertrophic-cardiomyopathy-ohcm/): SCOUT-HCM demonstrated the superiority of Camzyos on the primary endpoint and multiple secondary endpoints - [Tampa General Hospital Earns HCMA Center of Excellence Designation for Hypertrophic Cardiomyopathy Care](https://4hcm.org/tampa-general-hospital-earns-hcma-center-of-excellence-designation-for-hypertrophic-cardiomyopathy-care/): Tampa General Hospital (TGH) has been recognized as a Center of Excellence by the Hypertrophic Cardiomyopathy Association (HCMA), placing it among an elite group of hospitals nationwide and making it one of only four centers in Florida and the only one on the West Coast of Florida to achieve this distinction. - [Grieving Esther – A Husband’s Story](https://4hcm.org/grieving-esther-a-husbands-story/): Reflections from Lisa Salberg, Founder and CEO: - [August’s Topic Is Newly Diagnosed](https://4hcm.org/august-s-topic-is-newly-diagnosed/): Are you newly diagnosed with HCM, or have your symptoms recently changed? - [Urge Congress to Invest in Medicaid and Medicare!](https://4hcm.org/invest-medicaid-medicare/): Sixty years ago, Medicaid and Medicare were created when President Lyndon B. Johnson signed the Social Security Amendments into law. These programs were central to Johnson’s “War on Poverty,” designed to combat health and economic inequality. - [HCMA Welcomes Three New Board Members](https://4hcm.org/hcma-welcomes-three-new-board-members/): Jan Berger, MD, MJ is an independent director with significant board and committee experience, a Chief Executive Officer of an International Consulting Company, a Fortune 20 corporate officer, an author, and a keynote speaker. Jan has proven success in public, private and government service over the last 30 years in both healthcare, life sciences, veterinary care and consumer goods/services. This tri-sector experience including her role at CVS Health and Health Intelligence Partners has been translated into her roles in the board room. In 2019, Jan was recognized by Crain’s Business Chicago as a Notable LGBTQ Executive, in 2022 she was recognized by Mogul as a top 100 DEI Leader, 2023 recognized by Directors and Boards as an Outstanding Director of a Public Company and in 2023 and 2024 Recognized in The Global Who’s Who in Trust, Ethics and Leadership. - [Lisa’s Letter – July Newsletter](https://4hcm.org/lisa-letter-july-newsletter/): Summer, greetings to all our big-hearted friends - [Hypertrophic Cardiomyopathy Care Centers](https://4hcm.org/july-2025-coe-care-hcma/): A Center of Excellence is a team of specialists who provide high-quality care to patients with a specific disease. They use accepted best practices in their specialty. Medical facilities often seek COE status if they have a team working on a disease. These diseases include Cancer, Diabetes, Alzheimer's, or, of course, HCM. - [Pro Publica Releases Results of FDA Investigation](https://4hcm.org/pro-publica-generic-drugs/): Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs. - [Alnylam Receives European Commission Approval for AMVUTTRA® (Vutrisiran) for the Treatment of ATTR Amyloidosis with Cardiomyopathy (ATTR-CM)](https://4hcm.org/alnylam-ec-approval-amvuttra-attr-cm/): Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), the leading RNA interference (RNAi) therapeutics company, today announced that the European Commission (EC) has granted approval for the treatment of wild-type or hereditary transthyretin amyloidosis in adult patients with cardiomyopathy (ATTR-CM) as an additional indication for its orphan RNAi therapeutic AMVUTTRA® (vutrisiran). The approval broadens the indication for AMVUTTRA, which now becomes the first and only RNAi therapeutic approved by the EC for the treatment of the cardiomyopathy manifestations of ATTR amyloidosis and the polyneuropathy manifestations of hereditary transthyretin-mediated amyloidosis (hATTR) in adults. “The HELIOS-B findings provide compelling evidence to support the use of vutrisiran as a first-line treatment option for patients with ATTR-CM,” said Marianna Fontana, M.D., Ph.D., HELIOS-B investigator, Professor of Cardiology, University College London, National Amyloidosis Center, Royal Free Hospital, London. “As a physician, it is a privilege to see the true impact on patients in the clinic. The trial enrolled a broad population reflective of real-world clinical practice, and that’s what makes the results so meaningful. This is a milestone for patients, who now have a new treatment option that has the potential to significantly improve outcomes of this disease.” In May 2025, the European Medicines Agency’s Committee for Orphan Medicinal Products (COMP) adopted a positive opinion on the maintenance of the EU Orphan Designation for AMVUTTRA in ATTR amyloidosis. For more Information, read the full Alnylam press release. - [Alnylam Announces FDA Approval of AMVUTTRA® (Vutrisiran) for Adults with ATTR Amyloidosis with Cardiomyopathy (ATTR-CM)](https://4hcm.org/fda-approval-alnylam-amvuttra-vutrisiran-attr/): AMVUTTRA is an RNAi therapeutic that works upstream to deliver rapid knockdown of TTR, addressing the disease at its source, with only four convenient subcutaneous doses per year. By rapidly knocking down TTR production, AMVUTTRA substantially decreases deposition of TTR fibrils, which form amyloid and cause irreversible cardiovascular damage and premature death in patients with ATTR-CM. - [HCM in Pregnancy](https://4hcm.org/hcm-pregnancy/): Pregnancy is a stress on the body even for healthy people. When we have a serious disease, we tend to have even more questions. As long as you have an excellent HCM specialty team and take health precautions, pregnancy with HCM is usually safe. It is vital that you take your time planning your pregnancy based on your symptoms and situation. Be sure to talk to a genetic counselor, your cardiology team, and your prenatal care provider. You may need to take steps to get your HCM symptoms under control before you get pregnant. This will improve your chances of having a safe and healthy pregnancy. - [Decisions in HCM: My Risk Estimate Was Wrong!](https://4hcm.org/decisions-in-hcm-my-risk-estimate-was-wrong/): You've been told that you had a high risk - say, 5% - of something dangerous, like a lethal arrhythmia, in the next year. Twelve years later there hasn't been a hint of that event occurring. That's great! But many people understandably are annoyed: they were told they were at risk, they got the treatment (an ICD for example), but it hasn't actually been needed. Sometimes people feel as though they were misled. - [Lisa’s Letter – June Newsletter](https://4hcm.org/lisa-s-letter-june-newsletter/): June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. - [June’s Topic Is Staying Fit with HCM](https://4hcm.org/staying-fit/): There needs to be more clarity about exercise for HCM patients. Some doctors say, "don't do anything physical," and others say, "do whatever you want." We can likely agree on one thing – the best advice is somewhere in the middle. - [Legislative Advocacy Updates June 2025](https://4hcm.org/legislative-advocacy-updates-june-2025/): Nevada HCMA Legislative State Champion Jane Grossman helped introduce an essential component of the Children's Cardiac Safety Act into another related bill, a broad-ranging health bill. Rather than introducing a separate bill, Assemblymember David Orentlicher thought he would have a better chance of passing this legislation by combining it with other changes for medical providers (Nevada AB 319). - [Cytokinetics Announces Positive Topline Results from MAPLE-HCM](https://4hcm.org/cytokinetics-announces-positive-topline-results-from-maple-hcm/): Cytokinetics, Incorporated (Nasdaq: CYTK) today announced positive topline results from MAPLE-HCM (Metoprolol vs Aficamten in Patients with LVOT Obstruction on Exercise Capacity in HCM), a Phase 3 clinical trial comparing aficamten as monotherapy to the standard of care beta blocker metoprolol as monotherapy in patients with symptomatic obstructive hypertrophic cardiomyopathy (HCM). - [Decisions in HCM: Where Do Risk Estimates Come From?](https://4hcm.org/decisions-in-hcm-where-do-risk-estimates-come-from/): Risk estimates come from data on patients. The fact that the numbers are "estimates" does not mean that they are guesses or made up - it means that they are calculated from real data. - [Decisions in HCM: Understanding Risk](https://4hcm.org/decisions-in-hcm-understanding-risk/): Risk is a concept we have encountered many times during our HCM journeys, and we want to help you understand it and its implications. We'll explain what risk means and how risks are estimated, and we'll discuss how to use these risk estimates in making decisions about HCM care. Though it sounds like a simple idea, risk can be complicated; we will do our best to make this series readable for all HCM patients. - [Reflections from Capitol Hill 2025](https://4hcm.org/reflections-from-capitol-hill-2025/): I do not claim to be a political expert, but I do know what I am - a passionate patient advocate who has seen how systems can work for and against patients, and someone willing to put thought into action, to create a plan to make healthcare safer for a population that has long been ignored and at high risk. - [Lisa’s Letter – May Newsletter](https://4hcm.org/newsletter-may/): Greetings to all of our Bighearted friends, - [Learn Your Medical Therapy Options for HCM This Month](https://4hcm.org/medical-management-may2025/): Medical Management means using medicines and other non-invasive therapies to relieve symptoms. The FDA approved Camzyos in 2022 and It's exciting that new treatments for HCM are being studied! - [Decisions in HCM: Why Are They So Hard?](https://4hcm.org/decisions-in-hcm-why-are-they-so-hard/): Making decisions can be hard, and this is especially true when health is involved. A key reason is that most decisions involve more than one risk. - [Camzyos® Receives Manufacturing and Marketing Approval for HOCM in Japan](https://4hcm.org/camzyos-approval-for-hocm-in-japan/): 2025/03/27 Bristol-Myers Squibb Company - [US FDA Updates Camzyos Label for oHCM](https://4hcm.org/camzyos-label-updates/): Label updates include simplified twice-yearly echo monitoring for eligible CAMZYOS patients in the maintenance phase and expanded patient eligibility with reduced contraindications. The updated U.S. label is supported by data including long-term clinical and real-world evidence which reinforce the strong safety profile of CAMZYOS. - [Press Release: Piedmont Heart Recognized as an HCM COE](https://4hcm.org/piedmont-heart-coe-press-release/): Piedmont Heart has been recognized as a Center of Excellence by the Hypertrophic Cardiomyopathy Association. - [Lisa’s Letter – April Newsletter](https://4hcm.org/newsletter-april/): It is hard to believe the first quarter of 2025 is in the history books. In the space of hypertrophic cardiomyopathy and thick heart muscle disorders, the distance between the promise and the delivery of a reality freed from burden of disease is closer than it has ever been, not only in the United States but throughout the world. Unfortunately, we are navigating through some challenging health policy times, which will impact a large percentage of those with the diseases we seek to serve. While we navigate these challenging waters together, we remain committed to ensuring safe, accessible, affordable healthcare while ensuring the rights of those with disabilities are maintained. - [Decisions in HCM, How to Identify, Analyze and Evaluate Decisions in Your HCM Life](https://4hcm.org/decisions-in-hcm-1/): Shared decision-making is a term used a lot in healthcare settings and medical education these days. It represents the latest understanding of the physician's and patient’s roles and responsibilities in helping patients make decisions about their health. Shared decision-making is intended to combine patient preferences, the physician's clinical expertise and the latest medical research to make more informed healthcare decisions. - [HCMA Gifted $1500 Harrah’s Grant](https://4hcm.org/hcma-receives-grant-from-harrah-s-resort/): Harrah’s Southern California Resort in Funner, CA has a great program called “Funner Model Citizen” which consists of Team Members with a passion for making a positive impact by serving guests, the team, and/or the community. - [April’s Topic Is Genetic Testing](https://4hcm.org/april-2025-genetic-testing/): Suppose you have been diagnosed with HCM through an EKG, echocardiogram, and a visit with a cardiologist. Most experts recommend that you have genetic testing to know for sure why your heart is too thick. - [Press Release: UW Medicine Recognized as an HCM COE](https://4hcm.org/the-hypertrophic-cardiomyopathy-association-welcomes-our-newest-recognaized-center-of-excellence-uw-medicine-hypertrophic-cardiomyopathy-clinic/): We are proud to announce that the UW Medicine Hypertrophic Cardiomyopathy (HCM) Clinic has received the “Center of Excellence” recognition from the HCMA. The UW Medicine HCM Clinic, led by David S. Owens, MD, was established in 2010 and provides consultation by a team of clinicians with expertise in diagnosing and managing HCM and other related heart muscle disorders. The UW Medicine HCM Clinic includes HCM specialists, electrophysiologists, medical geneticists, interventional cardiologists, and cardiac surgeons, all collaborating to provide optimal diagnostic and treatment options, including cardiac myosin inhibitor and septal reduction therapies. The HCM Clinic works closely with the UW Medicine Genetics Clinic for genetic testing and family screening, the UW Medicine Cardio-Obstetrics Clinic for management of HCM during pregnancy, and Seattle Children’s Hospital for pediatric screening and seamless transition of children to adult cardiology care. Each person is evaluated and treated using an inclusive, patient-centered, and integrated approach to establish an ongoing partnership in care. - [Arrhythmia Is the HCMA Topic for March](https://4hcm.org/arrythmia-2025/): by Sabrina Cuddy An arrhythmia is a problem with the rate or rhythm of your heartbeat. It means that your heart beats too quickly, too slowly, or with an irregular pattern. This can be scary, but many arrhythmias are harmless, and others are very treatable! - [Camzyos Is Safe](https://4hcm.org/camzyos-is-safe/): The new drug Camzyos (mavacamten) has been nothing less than life changing for some patients who have HCM with obstruction. But like any drug, not all patients can take it, and not all those who take it benefit enough to stay with it. It can also add complication to a patient's life. Insurance coverage is often unpredictable. The FDA-mandated REMS (Risk Evaluation and Management System) and warnings may seem daunting to some. - [COVID-19 Vaccine with HCM?](https://4hcm.org/covid-19-vaccine-with-hcm/): Getting vaccinated (or not) for any disease is a decision that each of us has to make. Ideally, it should be based on understanding the potential risks and benefits of the vaccine - and the risks and benefits of not getting vaccinated. - [Press Release: Johns Hopkins Recognized as an HCM COE](https://4hcm.org/johns-hopkins-coe-press-release/): 1.3 million Americans suffer from hypertrophic cardiomyopathy (HCM), the most common genetic heart disease in the US. This mainly inherited condition causes the heart muscle to thicken and become stiff, which makes it very difficult to pump blood and leads to heart rhythm abnormalities. Yet, according to UCLA Health, only 15% of affected individuals are even aware they have this condition. - [Press Release: Wellstar Recognized as an HCM COE](https://4hcm.org/wellstar-coe-press-release/): 1.3 million Americans—suffer from hypertrophic cardiomyopathy (HCM), the most common genetic heart disease in the US. This mainly inherited condition causes the heart muscle to thicken and become stiff, which makes it very difficult to pump blood and leads to heart rhythm abnormalities. Yet, according to the National Institutes of Health, only 15% of affected individuals are even aware they have this condition. - [Press Release: Virginia Mason Recognized as an HCM COE](https://4hcm.org/vmfh-coe-press-release/): Virginia Mason Franciscan Health's (VMFH) the Center for Cardiovascular Health’s hypertrophic cardiomyopathy (HCM) program has been designated a national Center of Excellence by the Hypertrophic Cardiomyopathy Association (HCMA). This prestigious designation is awarded to HCM centers that have an experienced multidisciplinary team, a longstanding reputation for patient-centered care, a focus on research and education, and advanced imaging facilities. VMFH is now one of only around 50 centers in the country, and the first in CommonSpirit, designated as a national Center of Excellence. - [Setting Your HCM Health Plan for the Year](https://4hcm.org/the-hcma-theme-for-januaryy-is-setting-your-plan-for-the-year/): You must advocate for yourself to get the best care for your HCM. The first step is to have a plan that includes the tests you need and how often to see your cardiologist. To make planning easier, the HCMA offers Navigation Calls. We encourage everyone with HCM to complete our Intake and Navigation Call at least once to help you get on track with your care. This is a free service, although paid members may take advantage of extra calls if needed during the year. - [The HCMA Theme for December Is Gratitude](https://4hcm.org/december-is-gratitude/): Gratitude has benefits for both mental and physical health as well as our relationships with those around us. When we’re thankful for anything positive in our lives, it leads to a shift in mindset that helps us feel better and take action to stay as healthy as possible. What can you think of that’s been good for you this month? What about this year? Who are the people in your life you appreciate? What in your life makes you feel grateful? - [Holiday Weight Management](https://4hcm.org/holiday-weight-management/): At the HCMA, November is when we’re thinking about weight management. We all know that winter months and holiday foods can lead to potential weight gain, and it happens to the best of us. It’s easy to gain weight with all the less healthy options in front of us – face it, we all love yummy treats! Those of us with HCM do better if we stay as close to our ideal weight as possible, so having an eating strategy over the holidays can help. - [It’s Emotional Wellness October!](https://4hcm.org/its-emotional-wellness-october-2/): Treating the whole person is essential because your mind, emotional state, and physical symptoms interact. One example is that you can increase an arrhythmia by becoming anxious when it happens. It’s natural to be anxious when your heart does something unusual, but through slow breathing, relaxation, and other coping techniques, you can help yourself feel better. You can balance your emotional state by learning when you must pay attention to your symptoms and when you can safely ignore them. The HCMA and your medical team can help you learn how your body works with HCM. - [Septal Reduction September](https://4hcm.org/septal-reduction-september-2/): If you have been experiencing symptoms of obstruction, such as shortness of breath, exercise intolerance, light-headedness, or fainting, despite using medications, it might be time to consider septal reduction. The most appropriate septal reduction therapy for each patient depends on several factors, which you can discuss with your HCM team. If you need assistance understanding these options or guidance on communicating with your doctor, we are here to help. Please do not hesitate to reach out to the HCMA for support. - [New Sponsor- Viz.ai](https://4hcm.org/new-sponsor-viz-ai/): The HCMA is happy to announce our new sponsor Viz.ai in the coming months, you will be invited to a webinar to learn more about their methods to detect the undiagnosed. We plan to work closely with our Recognized Centers of Excellence to find the right methods of implantation of AI solutions to aid in identifying the currently undiagnosed. Here is the abstract from ACC “Racial and Phenotypic Variations in Detection of Hypertrophic Cardiomyopathy using an Artificial Intelligence-Enabled Electrocardiogram: Real World Experience,” by Matt Martinez and team at Morristown Medical Center. - [How Patients and Families Can Help Build an Understanding of HCM Care, Awareness, and Advocacy](https://4hcm.org/how-patients-and-families-can-help-build-an-understanding-of-hcm-care-awareness-and-advocacy/): Innovation has come to HCM through new therapeutic options under investigation. Several trials are open, and several more are planned for later this year or early 2025. - [HCMA Lori Fund](https://4hcm.org/hcma-lori-fund/): The HCMA is proud to recognize 51 Centers of Excellence (COE), where patients can be confident they will be cared for by knowledgeable, skilled HCM experts. However, the distance and financial resources needed to reach a COE can be a burden for families. That’s why the HCMA started the Lori Fund in 2023. The Fund covers up to $600 in transportation, meals, and hotels for HCM patients traveling to a COE. - [Are You Newly Diagnosed with HCM, or Have Your Symptoms Recently Changed?](https://4hcm.org/are-you-newly-diagnosed-with-hcm-or-have-your-symptoms-recently-changed-2/): We understand that having a new diagnosis or changes in your condition can be daunting, but please know you’re not alone. The HCMA is here to support you every step of the way! In addition to the helpful info in this newsletter and on our website, we encourage you to contact us for an Intake and Navigation Call or a short Update Call if you’ve done Intake before. To get started, sign up at https://4hcm.org/education-and-support/ or by calling +1 973-983-7429. Those outside the US can request a Zoom call to save on long-distance call costs. - [July Is About COE Care at the HCMA!](https://4hcm.org/july-is-about-coe-care-at-the-hcma-2/): Have you ever wondered what a Center of Excellence (COE) is? A COE is a dream team of specialists who work together to provide top-notch care to patients with specific diseases. They follow the best, most up-to-date practices. Many medical facilities strive to become a COE by forming a dedicated team that focuses on treating diseases like Cancer, Diabetes, Alzheimer’s, and our main focus, HCM. - [HCMA West Coast Tour](https://4hcm.org/hcma-west-coast-tour/): Lisa Salberg, CEO and Founder, and I will host two Meet and Greets during our travel on the West Coast in July! - [Volunteer!](https://4hcm.org/volunteer-14/): The HCMA has many volunteer opportunities to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. - [Volunteer!](https://4hcm.org/volunteer-13/): The HCMA has many volunteer opportunities to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. - [The HCMA’s Focus for June Is Staying Fit with HCM!](https://4hcm.org/the-hcmas-focus-for-june-is-staying-fit-with-hcm/): There needs to be more clarity about exercise for HCM patients. Some doctors say, “don’t do anything physical,” and others say, “do whatever you want.” We can likely agree on one thing – they’re both wrong, and the best advice is somewhere in the middle. - [Swinging for a Cause: Golf Outings to Support HCMA](https://4hcm.org/swinging-for-a-cause-golf-outings-to-support-hcma/): Golf outings aren’t just about perfecting your swing or enjoying a sunny day on the course—they’re also a powerful tool for raising awareness and funds for the HCMA. The organization has benefited from many volunteer-led golf outings over the years. The longest standing is the George Dooley Golf Outing, which has supported the HCMA while honoring the memory of George Dooley since 2016. This year’s event will be on September 16 in Kenilworth, New Jersey. If you’d like to run a golf tournament in your local community, please reach out to support@4hcm.org to discuss what resources HCMA can offer. - [HCMA’s Lifesaving Engagement in the Local Community](https://4hcm.org/hcmas-lifesaving-engagement-in-the-local-community/): On April 20th, HCMA spread awareness of HCM and sudden cardiac arrest (SCA) at the Denville Little League’s opening day ceremony, which attracted over 1,000 residents. At HCMA’s booth, Lisa Salberg, Elena Morgan, Adam Salberg, Lisa Vecchione, Kim Walsh, Arniella Santos, and John Titus, shared information about HCM and SCA preparedness, while promoting an upcoming training focused on sports teams– Drill: Dr. Heart. - [In-Person Bighearted Warriors Unite Featuring the Christ Hospital & Cincinnati Children’s](https://4hcm.org/in-person-bighearted-warriors-unite-featuring-the-christ-hospital-cincinnati-childrens/): The In-Person Bighearted Warriors Unite featuring The Christ Hospital & Cincinnati Children’s event held in Cincinnati, Ohio was a tremendous success, where we were pleased to see so many of you in person. The event commenced with a warm welcome address by Lisa Salberg. The day was focused on educating people about HCM, and it was led by HCM Program Directors Dr. Wojciech Mazur and Dr. Ankit Bhatia. The event featured a group of distinguished speakers, including Dr. Edward Schloss, Dr. Puvi Seshiah, Courtney Hannum, Cassady Palmer, Dr. Ryan Moore, Dr. Tom Ryan, and the Anderson & Steel Family. The HCMA would like to thank all of the staff and volunteers who worked tirelessly to make this day successful and impactful for the HCM community. Lastly, Brittany Johnson of The Christ Hospital took some beautiful photos that captured the essence of the event and are available for viewing. - [Volunteer!](https://4hcm.org/volunteer-12/): The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. Are you interested in learning more about becoming a discussion group leader? Are you interested in making a difference through the legislative process at the state or federal levels? How about helping to spread awareness about HCM by becoming an HCMA Ambassador or even a “Share Your Story” volunteer? Many opportunities exist to help create the world we want to see for HCM patients and their families. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. - [Medical Management May](https://4hcm.org/medical-management-may/): Medical Management means using medications and other non-invasive therapies to treat disease and relieve symptoms. It’s exciting and historic that new treatments targeted for HCM are being studied and that the FDA approved Camzyos in 2022! - [The Christ Hospital Health Network HCM Program – Cincinnati, OH](https://4hcm.org/the-christ-hospital-health-network-hcm-program-cincinnati-oh/): The HCMA is going on the road! We are holding our 1st in-person Bighearted Warriors Unite- Featuring The Christ Hospital & Cincinnati Children’s Hospital. - [Volunteer!](https://4hcm.org/volunteer-11/): What inspires you? Sharing your experiences to help educate or encourage others? Advocating with or for those with whom you share a common goal? The HCMA has many volunteer opportunities to keep you inspired, fulfilled, and active within the HCM community. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. - [April’s Topic Is Genetic Testing](https://4hcm.org/aprils-topic-is-genetic-testing/): Suppose you have been clinically (through an EKG, echocardiogram, and a visit with a cardiologist) diagnosed with HCM. In that case, most experts recommend that you have genetic testing to determine the underlying reason your heart is too thick. - [Volunteer!](https://4hcm.org/volunteer-10/): Welcome Spring! Our volunteers plant seeds of hope and positive change for the HCM community that blossom year-round. Spring is a time to look around and within and reflect on all that has passed and all that is yet to come. Last month, with Heart Month & HCM Awareness Day, we received a significant amount of interest from individuals desiring to become HCMA volunteers. The future is bright! - [Vanderbilt Heart and Vascular Institute– Nashville, TN](https://4hcm.org/vanderbilt-heart-and-vascular-institute-nashville-tn/): Vanderbilt Heart and Vascular Institute is among the best heart programs in the nation and the top-ranked program in Tennessee. The Genetic Cardiomyopathy Program and the multidisciplinary care team deliver expert care for HCM in adults and children and provide genetic counseling for their families. The Vanderbilt Team has additional board certifications in advanced heart disease, advanced imaging, cardiopulmonary exercise testing, arrhythmias, congenital heart disease, structural catheter-based intervention, and cardiac surgery. The Vanderbilt Team works closely with the doctors at Monroe Carell Jr. Children’s Hospital at Vanderbilt to help transition families from pediatric care to adult care. The team creates a care plan that meets your unique health goals and needs. Vanderbilt Health is one of the top heart transplant programs in the world, providing patients with outstanding outcomes and access to innovative new research and treatments. - [Hcmas First Hill Day](https://4hcm.org/hcmas-first-hill-day/): This year’s Hill Day Event during Heart Month was a success by all measures. It was our first year participating, and while it was a success, we’ve already come up with ideas on how to make it even better next year. This is what the HCM Community does – make something good and make it better! - [Arrhythmia Is the HCMA Topic for March](https://4hcm.org/arrhythmia-is-the-hcma-topic-for-march/): An arrhythmia is a problem with the rate or rhythm of your heartbeat. It means that your heart beats too quickly, too slowly, or with an irregular pattern. This can be scary, but many arrhythmias are harmless, and others are very treatable! - [Yale New Haven Hospital Heart and Vascular Center – New Haven, CT](https://4hcm.org/yale-new-haven-hospital-heart-and-vascular-center-new-haven-ct/): Yale New Haven Hospital Heart and Vascular Center offer multidisciplinary services from the latest imaging techniques and genetic profiling of HCM to advanced diagnostic testing, treatment options, and clinical trials – all with an emphasis on compassion and communication. - [Volunteer!](https://4hcm.org/volunteer-9/): Happy Heart Month! February is going to be a busy month for the HCMA but, with the help of our volunteers, it truly makes the load a lot lighter! - [February Is Heart Month](https://4hcm.org/february-is-hcm-awareness-month/): About 50% of adults with HCM present with symptoms. You can be diagnosed with HCM at any age. It’s common to be diagnosed during the teenage years, but the average age of diagnosis in the HCMA database is 39 years. https://4hcm.org/hcm-development/ - [Corewell Health (Formerly Spectrum Health) HCM Program – Grand Rapids, Michigan](https://4hcm.org/corewell-health-hcm-program-grand-rapids-michigan/): The Hypertrophic Cardiomyopathy Program at Corewell Health (formerly Spectrum Health) in Grand Rapids, Michigan, was founded in 2013 and recognized as an HCMA Center of Excellence in 2017. - [Beware of “Alternative” Funding Programs When Choosing Your Health Plan](https://4hcm.org/beware-of-alternative-funding-programs-when-choosing-your-health-plan/): By: Lisa Salberg, Founder and CEO Hypertrophic Cardiomyopathy Association - [ORCCA Study](https://4hcm.org/orcca-study/): The ORCCA study aims to prospectively monitor clinical outcomes in athletes with potentially life‐threatening cardiovascular conditions. The study will assess long‐term cardiovascular outcomes, psychosocial well‐being, and sports eligibility decision‐making in competitive athletes aged 18 to - [Trial Participation- There Is Still Time to Join!](https://4hcm.org/trial-participation/): We’ve been urging you to learn a few important points about your disease because HCM has various presentations and important metrics. - [Volunteer!](https://4hcm.org/volunteer-8/): We have the plan and the road map and, with the help of our volunteers, we will reach our destination to ensure our mission to provide support, education, advocacy and care to those with HCM. - [ODYSSEY nHCM (Aka Hypertrophic Cardiomyopathy without Obstruction)](https://4hcm.org/odyssey-nhcm-aka-hypertrophic-cardiomyopathy-without-obstruction/): We are looking for HCM patients without obstruction experiencing shortness of breath, palpitations, tiring easily, and want to be in a clinical trial. In this trial, HCM non-obstructed patients will have the opportunity to participate in a myosin inhibitor trial, which assesses the safety and efficacy of mavacamten in this population. Mavacamten is an investigational product that has not been approved by FDA. - [The HCMA Theme for January Is Setting Your Plan for the Year](https://4hcm.org/setting-your-plan-for-the-year/): You must advocate for yourself to ensure you get the best care for your HCM. An essential first step is having a plan that includes the tests you will likely need and how often you should see your cardiologist. To make this planning more manageable, the HCMA offers Navigation Calls. Members can take advantage of this every year. Non-members are encouraged to complete our Intake and Navigation Call at least once to help you get on track with your care. - [Septal Myectomy and Alcohol Septal Ablation: How Safe and Effective?](https://4hcm.org/septal-myectomy-and-alcohol-septal-ablation-how-safe-and-effective/): A new meta-analysis ( Yokohama et al. 2023) on the comparative success and safety of the two methods of septal reduction therapy – alcohol septal ablation (ASA; https://4hcm.org/alcohol-septal-ablation/) and septal myectomy (SM; https://4hcm.org/myectomy/) – was just published in European Journal of Cardio-thoracic Surgery. - [Reasonable Accommodations](https://4hcm.org/reasonable-accommodations-updates/): Through collaboration with Reasonable Accommodations LLC, the HCMA has expanded some of our COE directories. This expansion will make it easier to find travel information, places to eat, lodgings, etc. Only a handful of COE directories have been updated so far, in 2024 we plan on populating the rest. - [Volunteer!](https://4hcm.org/volunteer-7/): Our volunteers give the HCM community so many things to be grateful for! They generously share their hearts, experiences and time to help so many and we are truly thankful for each and every one of you! There are so many more who are willing to be a part of our mission to provide support, education, advocacy and care to those with HCM and we are looking forward to engaging you all in the upcoming year in new and continuing projects. The HCMA would like to wish you all a safe, happy and healthy holiday season and New Year! - [Duke Hypertrophic Cardiomyopathy Center – Durham, NC](https://4hcm.org/duke-hypertrophic-cardiomyopathy-center/): Duke Hypertrophic Cardiomyopathy Center – Durham, NC - [Fall Conferences](https://4hcm.org/fall-conferences/): The Hypertrophic Cardiomyopathy Association played a key role at this fall’s HFSA and AHA conferences, actively engaging as exhibitors and offering valuable educational opportunities for the medical community. Their presence emphasized a dedication to increasing awareness and fostering discussions on hypertrophic cardiomyopathy, contributing to the broader conversation on cardiovascular health. Through their participation, the association further solidified its position in advancing knowledge and support within the medical community. - [Gratitude](https://4hcm.org/gratitude/): Gratitude has benefits for both mental and physical health as well as our relationships with those around us. When we’re thankful for anything positive in our lives, it leads to a shift in mindset that helps us feel better and take action to stay as healthy as possible. What can you think of that’s been good for you this month? What about this year? Who are the people in your life you appreciate? What in your life makes you feel grateful? - [George Dooley Memorial](https://4hcm.org/george-dooley-memorial/): It’s been 24 years – and we will never forget. Twenty-four years without my brother, George, who was also a son, husband, father, teacher, coach and so much more than the roles he played. - [November’s Theme: Weight Management](https://4hcm.org/novembers-theme-weight-management/): At the HCMA, November is when we’re thinking about weight management. We all know that winter months and holiday foods can lead to potential weight gain, and it happens to the best of us. It’s easy to gain weight with all the less healthy options in front of us – face it, we all love yummy treats! Those of us with HCM do better if we stay as close to our ideal weight as possible, so having an eating strategy over the holidays can help. - [Welcome the Christ Hospital Health Network HCM Program – Cincinnati, OH](https://4hcm.org/welcome-the-christ-hospital-health-network-hcm-program-cincinnati-oh-2/): The Christ Hospital HCM Clinic is a multidisciplinary cardiovascular program. The HCM Clinic provides patient-specific care and collaborates with subspecialties within the institution to address the complexity often associated with hypertrophic cardiomyopathy. The Christ Hospital provides a team of subspecialized cardiologists, electrophysiologists, CT, and Vascular Surgeons with various advanced diagnostic services and treatments. In addition, the HCM Clinic offers dedicated support staff, including a devoted physician’s assistant, registered nurse, HCM program coordinator, medical assistant, and HCM scheduler. The mission of The Christ Hospital’s HCM program is that they are committed to providing the highest quality of care to hypertrophic cardiomyopathy patients in our community by forming personalized strategies to empower each patient along their clinical pathway. Their vision is to “Create a seamless and accessible pathway for hypertrophic cardiomyopathy patients. The Christ Hospital HCM program is excited to be able to offer a nationally respected team of physicians and have at our patient’s disposal today’s most advanced therapies for the treatment and management of hypertrophic cardiomyopathy.” - [Dear Lori](https://4hcm.org/dear-lori/): Hello readers! I am sharing a letter I wrote to my sister on October 6, 2023 while sitting in a sesson at the Heart Failure Society of America annual scientific session held in Cleveland Ohio. I intended this letter as a way to talk to my sister who passed away in June 1995. For those of you who have lost a loved one, we know we talk to them often, but I felt on this topic I wanted to write a letter – I later read this letter at the HCMA annual meeting. Lori is truly the core of all work done at the HCMA – she is my super power, my guide, my heart and my very loved sister. - [Welcome the Christ Hospital Health Network HCM Program – Cincinnati, OH](https://4hcm.org/welcome-the-christ-hospital-health-network-hcm-program-cincinnati-oh/): The Christ Hospital HCM Clinic is a multidisciplinary cardiovascular program. The HCM Clinic provides patient-specific care and collaborates with subspecialties within the institution to address the complexity often associated with hypertrophic cardiomyopathy. The Christ Hospital provides a team of subspecialized cardiologists, electrophysiologists, CT, and Vascular Surgeons with various advanced diagnostic services and treatments. In addition, the HCM Clinic offers dedicated support staff, including a devoted physician’s assistant, registered nurse, HCM program coordinator, medical assistant, and HCM scheduler. The mission of The Christ Hospital’s HCM program is that they are committed to providing the highest quality of care to hypertrophic cardiomyopathy patients in our community by forming personalized strategies to empower each patient along their clinical pathway. Their vision is to “Create a seamless and accessible pathway for hypertrophic cardiomyopathy patients. The Christ Hospital HCM program is excited to be able to offer a nationally respected team of physicians and have at our patient’s disposal today’s most advanced therapies for the treatment and management of hypertrophic cardiomyopathy.” - [Volunteer!](https://4hcm.org/volunteer-6/): Our volunteers are true “GEMS” to the entire HCM community and the HCMA has created the Volunteer GEM Awards program to help us formally recognize each of our volunteers individually for their role in helping the HCMA educate, support, and spread awareness to our HCM community. - [It’s Emotional Wellness October!](https://4hcm.org/its-emotional-wellness-october/): If you’re Newly Diagnosed with HCM or have been living with symptoms for a long time, you may sometimes struggle with the emotional aspects of this condition. The HCMA is here to help you! Here are some of the resources we have available: - [Educate and Advocate](https://4hcm.org/educate-and-advocate/): By Dawn Levitt – https://dawnlevittauthor.com/ - [HCMA Project Opportunities](https://4hcm.org/hcma-project-opportunities/): September brings many opportunities for our community to learn and share our experiences with HCM through trials, focus groups, and survey work . - [Volunteer!](https://4hcm.org/volunteer-5/): Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. The tireless dedication of our volunteers gives us the extra hand needed to make our community’s healthcare experiences positive. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click here. - [Septal Reduction September](https://4hcm.org/septal-reduction-september/): When symptoms of obstruction (such as shortness of breath, exercise intolerance, light-headedness, and fainting) persist despite using medications, or if obstruction severely restricts blood flow from the heart to the body, it’s time to consider septal reduction. What kind of septal reduction therapy is suitable for any patient depends on many factors you can discuss with your HCM team. If you need help understanding these options or would like guidance on how to speak with your doctor, please contact the HCMA. - [Medtronic ICD Recall](https://4hcm.org/medtronic-icd-recall/): What is the recall : The FDA has issued a Class 1 recall of Medtronic ICDs and CRT-Ds, manufactured after 2017, with a glassed feedthrough. - [Phillips AED Pad Recall](https://4hcm.org/phillips-aed-pad-recall/): What is the recall: Philips is notifying customers of a potential issue with the Adult SMART Pads Cartridge (M5071A) and the Infant/Child SMART Pads Cartridge (M5072A) for use specifically with the HeartStart HS1/OnSite/Home AEDs. - [HCMA’s August 2023 Featured Discussion Group Leader: Linda Montgomery](https://4hcm.org/hcma-august-2023-featured-discussion-group-leader/): Linda hosts our “Newly Diagnosed” education groups. These free online education sessions are ideal for those newly diagnosed (within the past two years) or those new to the HCMA. Linda offers several dates ×s each month to make it convenient for all to attend. - [Volunteer!](https://4hcm.org/volunteer-4/): Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. The tireless dedication of our volunteers gives us the extra hand needed to make our community’s healthcare experiences positive. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click here. ## Pages - [Learn about your HCM presentation:](https://4hcm.org/learn-about-your-hcm-presentation/): Providing you with a wallet-sized card with your nine key HCM factors: - [Legal Protections for People with HCM](https://4hcm.org/legal-protections/): US law protects people with HCM at work, at school and in health coverage. Start with the page that fits your situation. - [Bighearted 5K Warrior Walk](https://4hcm.org/warrior-walk/): The Bighearted 5K Warrior Walk honors our HCM warriors in their battles. Recognizing those whose battle is over and those who fight on. Each step is a tribute to a life that matters, a story to be remembered, and a family forever changed by HCM. - [AHA/HCMA Navigation](https://4hcm.org/secure-4hcm-org-forms-40/): Sign up to claim your FREE HCMA Intake and Navigation Call. - [Dr. Chris Pernell](https://4hcm.org/ahc-4a97bbd613/): Dr. Chris T. Pernell is a dynamic physician leader and social change agent. In her practice, she focuses on health justice, community advocacy, and population medicine and well-being. A celebrated visionary and apostle of public health, Dr. Chris serves as the Director of the NAACP Center for Health Equity. The Center is dedicated to driving equitable health outcomes and transforming healthcare systems while valuing the whole person. Before joining the nation’s oldest and most revered civil rights organization, she launched The Esther Group, a public health consulting and health equity strategy firm. As the founder of The EstherGroup, she is guided by the mandate to envision a future where organizations, communities, and systems can innovate for a better world and humanity. - [Lisa Salberg](https://4hcm.org/ahc-3/): Lisa Salberg is the Founder and CEO of The Hypertrophic Cardiomyopathy Association (HCMA). founded the organization in 1996 in memory of her sister as a global resource and support center for families affected by HCM. Prior to her current role, Lisa worked in Human Resources and Healthcare Administration for 20 years. Due to her efforts to increase information, support, and advocacy, Lisa began serving HCMA full-time in 2005. Today, the organization has served more than 22,000 families in 100 countries, and its website, www.4hcm.org, attracts 250,000 visitors annually. The HCMA podcast, Tales of the Heart, is now in its 6th season with more than 200 episodes. The HCMA’s annual conference attracts America’s leading cardiologists and hundreds of HCM patients and their families. - [Deatrah DuBose, APN, BC](https://4hcm.org/ahc-2/): Ms. DuBose is an Acute Care Nurse Practitioner with 29 years of experience, specializing in cardiology and cardiac surgery. She previously served as an instructor at Rutgers College of Nursing, where she developed the Simulation Lab and led the reorganization of the Acute Care Nurse Practitioner program. - [Dr. Tania Small](https://4hcm.org/ahc-1/): For Dr. Tania Small, medicine has always been more than science — it is a calling to transform not only how patients are treated, but how they experience care. A physician and global healthcare executive, she is dedicated to translating science into meaningful impact for patients. As Senior Vice President and Head of Medical Affairs at Bristol Myers Squibb, Dr. Small leads a multidisciplinary organization of physicians and scientists, advancing innovative medicines across oncology, hematology, immunology and neuroscience —ensuring that scientific excellence translates into measurable improvements in patient outcomes worldwide. - [Americans with Disability Act and HCM at Work.](https://4hcm.org/workplace-americans-with-disabilities-act/): There are some professions that are not well matched with a diagnosis of HCM, and in some cases a change in occupation, or the avoidance of these occupations is advised. - [The William Clifford Roberts Collection of HCM Hearts.](https://4hcm.org/william-clifford-roberts-md-hcm-heart-collection33b13ec8/): Join Lisa Salberg, Founder, and CEO of the HCMA, as she and Dr. William Roberts explore different explanted HCM Hearts that will be utilized for educational purposes after plasticization. - [Learn When in Life Hypertrophic Cardiomyopathy Develops](https://4hcm.org/when-does-hcm-develop/): HCM patients can be diagnosed at any age, from birth to age 80+, there are even cases of those in their 90's with new diagnoses. Although hypertrophy may be present at birth or in childhood, it is much more common for the heart to appear normal then. - [Ways to Support the HCMA](https://4hcm.org/ways-to-support/): The HCMA has many projects underway, from ongoing patient services to online and in-person events. The HCMA has raised awareness, provided support and advocated for care and policies to serve the thickhearted community. There are many ways to support HCMA’s mission and help us build a better future for HCM and other Bighearted patients everywhere. - [Virginia Passes the Children’s Cardiac Safety Act](https://4hcm.org/virginia-childrens-cardiac-safety-act/): Virginia children now have better protections to identify genetic heart muscle disorders and causes of sudden cardiac arrest. The HCMA thanks Virginia Senator Lamont Bagby who sponsored SB1320, Governor Glenn Youngkin, lobbyist Noah Reandeau, Chief of the Division of Cardiovascular Medicine, University of Virginia Health Dr. Christopher Kramer, and Kitty Broermann and Eric Broermann who spoke at our VA Legislative Briefing webinar last month. Thank you to HCMA ambassadors and volunteers and Virginia residents who helped make this possible! - [Get Personalized Help with Your HCM.](https://4hcm.org/update-your-intake/): After completing a guided Intake Call, everyone who contacts the HCMA is provided a complimentary 15-minute consultation to answer questions about a new diagnosis, medication decisions, and/or surgery. HCMA Members are provided with a 30-minute Navigation Call annually. In addition, Members may schedule 15-minute Update Calls as needed during the year. - [Learn About Treatments for Hypertrophic Cardiomyopathy](https://4hcm.org/treatment-journey/): Each patient needs to evaluate what is in their best interest, both short-term and long-term, before engaging in HCM treatment. We strongly encourage consulting with a high-volume HCMA Recognized Center of Excellence Program before any invasive procedure. - [Travel Insurance for Those with Medical Needs.](https://4hcm.org/travel-insurance/): Trip Insurance covers the cost of your trip in case something goes wrong. For example, if you need to cancel because you're not well. Trip Insurance may include Travel Medical. Read the policy to see if it covers what you need. Trip insurance may allow you to cancel or change your trip as needed. Check to see if coverage includes disease outbreaks where you plan to go. Look for any restrictions for the country you plan to visit. - [Terms & Conditions](https://4hcm.org/terms-and-conditions/): Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry's standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into electronic typesetting, remaining essentially unchanged. - [Donations](https://4hcm.org/you-belong-here/): Whether your heart is bighearted physically or emotionally, you belong here. - [Learn About the Symptoms of Hypertrophic Cardiomyopathy](https://4hcm.org/symptom-journey/): Symptoms from HCM can be difficult to define for some patients as they have lived with an HCM heart typically long before "official diagnosis", therefore "normal" is complicated to understand. There is no particular symptom or complaint which is unique to hypertrophic cardiomyopathy but there are typical symptoms patients experience. - [Sweden – Hypertrofisk Kardiomyopatis Svenska Sällskap (HCMSS)](https://4hcm.org/sweden-hypertrofisk-kardiomyopatis-svenska-s%c3%a4llskap-hcmss/): MISSION/OVERVIEW: The Hypertrofisk Kardiomyopatis Svenska Sällskap (HCMSS) was founded in 2022 to make life easier for people with HCM and to prevent HCM deaths. HCMSS is committed to providing support and education, creating opinion and promoting research and care around HCM - [Learn About Stroke and TIA in HCM Patients](https://4hcm.org/stroke/): Background: What Is Stroke? - [Comparing SSDI to SSI](https://4hcm.org/ssd-vs-ssi/): Q: What is Social Security Disability Insurance (SSDI), and how do you apply? - [HCMA Sponsors and Partners](https://4hcm.org/sponsors-partners/): We are thankful for the support of our village, including our sponsors, who make it all possible! - [Social Security Disability for HCM in the USA.](https://4hcm.org/social-security-disability-in-usa/): HCM, or hypertrophic cardiomyopathy (or hypertrophic obstructed cardiomyopathy), affects between 1 in 200 and 1 in 300 worldwide. If you have HCM and you are unable to work due to severe symptoms, you might be eligible for Social Security disability benefits in the United States. The Social Security Administration (SSA) offers monthly financial resources for people who are unable to maintain employment due to a serious illness. - [SEQUOIA-HCM Clinical Trial of an Investigational Drug](https://4hcm.org/sequoia/): Hypertrophic cardiomyopathy (HCM) is a chronic heart disease in which the abnormally thickened (hypertrophied) heart muscle (myocardium) prevents the heart from pumping blood efficiently (cardiomyopathy). - [Medical Examiners: If You Suspect HCM, We Can Assist.](https://4hcm.org/resources-for-medical-examiners/): The HCMA has access to pathologists and labs that can help you. - [Learn About Clinical Trials and Why You Might Join One](https://4hcm.org/research-journey/): This is an exciting and promising time for the HCM community. There are currently a large number of clinical trials with the goals of not only understanding HCM better but finally developing new drugs, treatments, and methods to help both treats and potentially minimize or eradicate HCM altogether. - [Regeneron Buys Genetic Information Company 23andMe](https://4hcm.org/regeneron-buys-23andme/): Pharmaceutical company Regeneron has agreed to buy 23andMe.com, the leading personal genomics and biotechnology company to resolve the company’s bankruptcy. HCMA CEO and Founder Lisa Salberg says, “HCMA has been working with Regeneron on potential projects not related to this acquisition. We have found them to be a reputable and science-driven organization. - [Learn About HCM Spectrum Disorder, Rasopathies/Noonan’s](https://4hcm.org/rasopathies/): RASopathies are rare and include several different conditions. The most common is Noonan Syndrome. These syndromes are typically found in childhood, but later diagnosis is possible. Most RASopathy patients (up to 80%) have heart problems, including congenital heart defects and "HCM". Other organs and systems are affected, such as the face, head, and kidneys. Those with RASopathies may have slow growth, developmental delay, and bleeding disorders. - [Professional Education: Hypertrophic Cardiomyopathy Education: HCM Academy Accredited CME & Clinical Resources](https://4hcm.org/professional-education/): HCM Academy offers different educational activities for primary and secondary care providers who are interested in advancing hypertrophic cardiomyopathy (HCM) care. Our content is tailored to meet the needs of GPs, family physicians, nurse practitioners and internists, as well as cardiologists, echocardiographers, electrophysiologists, cardiac sonographers, cardiology/registered nurses, physician assistants, pediatricians and pediatric nurses. - [Learn About HCM Spectrum Disorder, PRKAG2 Syndrome.](https://4hcm.org/prkag2/): PRKAG2 Syndrome is very rare. About 1 of 100 "HCM" cases is caused by PRKAG2 Syndrome. Up to 70% of those with PRKAG2 have heart disease. It affects other body parts, such as the brain, liver, kidneys, pancreas, and muscles. The name is based on the gene that causes this syndrome. - [Learn About HCM Spectrum Disorder, Pompe Disease.](https://4hcm.org/pompe/): Pompe Disease is very rare. It is usually diagnosed in infancy, but it can be diagnosed later. Almost all cases of Infantile Pompe involve the heart, with 92% having the appearance of HCM. About 12 of every 100 adult Pompe patients have a heart problem, usually "HCM". Pompe also causes muscle weakness, skeletal problems, gut problems, and hearing issues. - [Piedmont Atlanta Hospital – Adult Travel Planning Guide](https://4hcm.org/piedmont-atlanta-hospital/): Piedmont Metro Atlanta Travel Planning Guide - [Join HCM Patient Online Discussion Groups Here](https://4hcm.org/support-groups/): The HCMA introduced online patient discussion groups in January 2021 to give members of our community easy access to peer support resources, right from the comfort of their own home! - [The Many Pathways to a Diagnosis of HCM](https://4hcm.org/pathways-of-hypertrophic-cardiomyopathy/): Some people with HCM are not diagnosed properly for months, years, or even decades because HCM can mimic other illnesses. Even with a family history of cardiac issues, some people with HCM are not referred to a cardiologist right away. Many physicians - including cardiologists - are not familiar enough with HCM, and are sometimes fooled by the similarity of some of its symptoms to other problems. - [Learn About Obstruction in HCM (HOCM).](https://4hcm.org/obstruction/): Summary: Blood flow out of the heart to the body can become obstructed (blocked) because of the thickening in the heart wall. - [New York Heart Association Class Categories](https://4hcm.org/nyha/):  Doctors usually classify patients' heart failure according to the severity of their symptoms. The table below describes the most commonly used classification system, the New York Heart Association (NYHA) Functional Classification1. It places patients in one of four categories based on how much they are limited during physical activity. In the HCM community, this NYHA class system is less than ideal as patients may vary in class in a short period of time and not maintain a fixed NYHA Class, but rather experience what we at the HCMA describe as "Good Day/Bad Day syndrome". If you are asked in what class you are categorized you will understand it is based on observation. - [The HCMA Event Photo Gallery](https://4hcm.org/new-page-3/): HCMA Events - [Memorials of BigHearted Warriors](https://4hcm.org/memorials/): Memorial contributions may be made to:The Hypertrophic Cardiomyopathy Association66 Ford Road Suite 213B, Denville, NJ. 07834973.983.7429 - [Take Care of Your Mental Wellness with HCM.](https://4hcm.org/mental-health/): Why is it essential for those with HCM to pay attention to their mental well-being? - [The HCMA Store](https://4hcm.org/store/): Every purchase supports the HCMA’s work with patients and families. - [What People Newly Diagnosed with HCM Need to Know.](https://4hcm.org/newly-diagnosed/): The HCMA is open Monday through Friday during normal business hours, Eastern Time, and we are here to take your call. Don't hesitate to call us at 1-973-983-7429. - [Privacy Policy](https://4hcm.org/privacy-policy/): Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry's standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into electronic typesetting, remaining essentially unchanged. - [Support the HCMA by Becoming a Member](https://4hcm.org/membership/): Membership supports the HCMA and ensures that we are here for you, your family, and the next person that learns that they too have HCM and are simply not sure where to turn. - [The Lori Fund: Microgrants for Travel to a US COE](https://4hcm.org/lori-fund-micro-grants-for-the-bighearted/): Those who earn up to 300% of the Federal Poverty Guidelines based on household size are eligible for the Lori Fund. Income verification is required. You must complete the application and submit income verification, such as W2s, pay stubs, or social security statements; other documents may be accepted. - [Life with HCM: Symptoms, Diagnosis, and Treatment.](https://4hcm.org/living-with-hcm/): Here are some basic facts about HCM: - [Life Insurance Issues with HCM](https://4hcm.org/life-insurance/): If you have a group life policy through your employer, that may get you coverage. These plans are often term insurance that ends when you leave the job. Sometimes, you can keep your coverage by converting to an individual plan. Lately, many plans have portability options. Contact the insurance provider to ask about your options when you leave a job. - [Hypertrophic Cardiomyopathy Association – Patients](https://4hcm.org/landing-page-patients-supporters/): Information for Patients & Supporters - [Hypertrophic Cardiomyopathy Association – Clinicians](https://4hcm.org/for-clinicians/): To support the Bighearted - [Find Clinical Trials for HCM Medicines Under Study](https://4hcm.org/investigational-medication/): There are several new therapies under investigation for use in HCM. Below is a list of several medications at different stages of discovery, trial, or submission to the FDA (Food and Drug Administration - USA) - [Learn How Hypertrophic Cardiomyopathy Is Diagnosed.](https://4hcm.org/how-is-hcm-diagnosed/): HCM is identified through one of several paths, presentation of symptoms, clinical findings, or family history. To know if HCM is present in the heart most commonly will begin with imaging of the heart by echocardiogram or cardiac MRI. Genetic testing may be used but must begin with someone who has already displayed clinical HCM (the heart is already thick). If an HCM-promoting mutation is found, their close relatives can then be tested for the same mutation, to see if they are at risk of developing HCM. - [The HCMA: A Home for the Bighearted](https://4hcm.org/home/): Not all big hearts are the same  - [HCMA Hill Day 2025 Copy](https://4hcm.org/hill-day-2025514d9aef/): For this project, the challenge was in rebranding an established product to attract new audiences, while ensuring that current users feel connected. The results were outstanding. - [HCMA Hill Day 2025](https://4hcm.org/hill-day-2025/): On February 15, 2024, the Hypertrophic Cardiomyopathy Association hosted our first Congressional Legislative Briefing entitled “Getting to the Heart of Genetically Inherited Cardiac Disorders.” It was well received, so we are returning again this year. - [Hcmai Print Resources](https://4hcm.org/hcmai-print-resources/): HCMAi Printable Resources - [Hypertrophic Cardiomyopathy Association International](https://4hcm.org/hcmai/): Helping Patients Worldwide - [Find Past Videos from the HCMA](https://4hcm.org/hcma-video-archive-index/): In our media archive, you will find links to our past educational presentations on Facebook, YouTube, and Podbean. - [HCMA & Nest: Partnering to Make Services Accessible](https://4hcm.org/hcma-nest-portal-faq/): Resources HCMA/Nest FAQ What is HCMA/Nest? The Nest companion is your home for genetic information. Our goal is to support you with education and tools to improve your health, be proactive about your care, and stay on top of the latest medical guidelines for your condition. Why should I use HCMA/Nest? Nest is based on the philosophy that knowledge is power. Nest makes it easy for you to: Identify the specialty care you need based on your genetic informationLearn what to expect from screenings and procedures that may be recommended to manage your disease risksUpdate your health history informationAccess supporting services and resources Soon we plan to offer you additional services through the Nest platform like sharing information with healthcare providers and family members, consenting to participate in clinical trials and research, and keeping up with latest management guidelines for inherited diseases. What data is being collected? We are asking for an update on the latest tests you’ve completed as part of your HCM care, along with the dates you had the tests. Any test results will be shared directly with HCMA. Where is my data stored? We store your data securely on servers hosted by Amazon Web Services (AWS) in data centers located in the US. AWS is one of the leading cloud computing providers and has strict security protocols in place to protect your data.Nest Genomics believes that patients own and control their own data and will not commercialize or share your data with anyone outside of your provider. How is my data protected? We follow industry best practices to protect your data. This includes encrypting your data both in transit (when it is being sent over the internet) and at rest (when it is stored on our servers). We also use firewalls, intrusion detection systems, and other security measures to prevent unauthorized access to your data. In addition, we regularly monitor and test our systems to ensure they are secure and up-to-date with the latest security patches. We take the privacy and security of your data very seriously and are committed to keeping it safe. What will my data be used for? The information you provide will be used to update the HCMA’s patient registry. This registry allows HCMA to help you stay on track with recommended care, update you on changes to HCM management guidelines, offer you to participate in clinical studies, support you with personalized resources and more. Who should I contact if I have questions? For any help or questions with the portal, please email support@nestgenomics.com or for the overall registry, pm@4hcm.org - [HCMA Federal Bill Tracker](https://4hcm.org/hcma-bill-tracker-federal/): Stay up to date on the bills that impact your life. - [HCMA State Bill Tracker](https://4hcm.org/hcma-bill-tracker/): Stay up to date on the bills that impact your life. - [Hypertrofisk-Kardiomyopatis-Svenska-Sällskap](https://4hcm.org/hcm-swedish-society/): Hypertrofisk Kardiomyopatis Svenska Sällskap är en patient- och intresseförening för HCM. Föreningen är ideell och bildades 29 augusti 2022. Det är en Riksförening i Sverige men välkomnar även medlemmar från övriga Norden. Föreningen utgörs av personer med HCM och personer med genetiskt anlag eller familjär hereditet för HCM och dess undergrupper. Vi samarbetar internationellt med HCMA (Hypertrophic Cardiomyopathy Association) i USA, vilken fungerar som mentor i HCM-frågor. - [HCM – SJUKDOMEN Vad är HCM?](https://4hcm.org/hcm-sjukdomen/): HCM är en sjukdom som påverkar hjärtmuskeln och kan leda till andra allvarliga hälsotillstånd. - [Learn the History and Many Names of HCM](https://4hcm.org/hcm-many-names/): These names include: - [Learn the Ways HCM Can Progress in Different Patients.](https://4hcm.org/hcm-journey/): Receive guidance from trained patient navigators, - [Learn How Hypertrophic Cardiomyopathy Affects the Heart](https://4hcm.org/hcm-heart-affects/): It is helpful to be familiar with the structure and function of the normal heart in order to understand the abnormalities in HCM. Fig. 3 shows a normal heart and indicates the heart chambers, valves and the direction of blood flow. The walls of the heart are made of specialized muscle known as the myocardium. The myocardium is the part of the heart which is abnormal in HCM. - [Heart Month & HCM Awareness Day Events 2026](https://4hcm.org/hcm-awareness-day-open-house-2026/): Bring awareness & your HCM Journey to your community - [Learn About the Medications Used to Treat HCM](https://4hcm.org/medications/): HCM has many treatment options that may be considered. Each patient will need to evaluate what is in their best interest both short-term and long-term before engaging in treatment for HCM. - [Free CME for Medical Professionals – HCM Academy](https://4hcm.org/hcm-academy/): Developed by experts and offering education for primary and secondary care, the curriculum aims to provide education and awareness on: - [Gold GEM Level: 20 Volunteer Hours](https://4hcm.org/gold-gems-awards-winners-photo-gallery/): Our Gold GEM Award Winners have given 20+ volunteer hours to HCMA projects Victoria Caragay Wyatt Trudy Tynan Thomas Cavallaro Sydelle Zinn Susan Shapiro Rob Lorfink Paul Perlman Milla Arabadjian Mike Lynch Matthew Hollamby Mary Ann & Daniel Broughton Marsha Rosenberg Marc Block Lynda Neuhausen Lisa Vecchione Kitty Broermann Kevin O'Connor Karen Newstrom Joey Graham Greg LeValley Erica Broermann Debra Rafson Dawn Levitt Breanna Restorick Barbara Cavallaro Ashley Fisher Alison Conklin Alex deFeria Adam Salberg - [Glossary of Terms and Procedures Used in HCM.](https://4hcm.org/glossary/): Ablation: Catheter Ablations for Arrhythmias the surgical removal of body tissue. - [The Genetic Information Non-Discrimination Act (GINA)](https://4hcm.org/gina/): GINA is a US federal law. It protects you from discrimination based on genetic status regarding access to health coverage, employment, and education (covered by some state-specific laws). - [Start Learning About Hypertrophic Cardiomyopathy Here.](https://4hcm.org/getting-started/): HCM is a disease that affects the heart muscle and could lead to other serious health conditions. The heart is a muscle that pumps oxygen-rich blood around the body by contracting and relaxing. - [Get Involved with the HCMA, We Need You!](https://4hcm.org/get-involved/): The HCMA staff is here to provide education, support, and advocacy. Our programs and services take time, skill, and funding to ensure they are comprehensive and offer the quality our families deserve. We need YOUR help to continue to provide these services. - [Accessing Genetic Testing with HCM](https://4hcm.org/genetic-access-cost/): Genetic testing determines if you have gene changes linked to HCM or an HCM spectrum disorder. Currently, there are over a dozen genetic disorders connected to HCM with disease-causing mutations in 40% of patients screened. They include GLA, LAMP2, MYBPC3, MYH6, MYH7, MYL2, MYL3, PRKAG2, TNNI3,TNNT2, TPM1, and TTR. Testing can use blood, cheek swabs, or saliva samples. Results typically take 3-6 weeks to get to your healthcare provider. - [Generic Drug Quality in the USA: Get Informed.](https://4hcm.org/generic-drug-crisis/): The generic drugs many of us depend upon are not the same as their brand-name counterparts. In fact, as much as 30% of all generics dispensed in the US contain harmful contaminants. This is unacceptable! Patients deserve confidence in the medications they take every day. - [The HCMA GEM Awards Program Recognizes Our Volunteers .](https://4hcm.org/gems-awards/): The HCMA Volunteer GEM Awards program formally recognizes each of our volunteers individually for their role in helping the HCMA educate, support and spread awareness to our HCM community. Prizes will be awarded for volunteer hours accumulated between September 1st and August 31st each year . - [Ruby GEM Level: 80+ Volunteer Hours](https://4hcm.org/gems-ruby/): Our Ruby GEM Award Winners have given 80+ volunteer hours to HCMA projects Tim Westhaver Scott Baroccas Marty Maron Gordon Fox Bill Rossi - [Learn About HCM Spectrum Disorder, Friedreich’s Ataxia.](https://4hcm.org/friedreich-s-ataxia/): Friedreich's Ataxia (FA) is very rare. More than half of adults with FA have heart problems, often "HCM". FA also causes muscle weakness, speech problems, spinal issues, diabetes, hearing loss, and vision loss. The muscle weakness is significant in these patients. - [What Is Hypertrophic Cardiomyopathy?](https://4hcm.org/what-is-hcm/): Welcome. Whether you have just been diagnosed, you are caring for someone who has, or HCM runs in your family, this is the place to start. Below you will find what hypertrophic cardiomyopathy is, what it isn't, and answers to the questions people ask first. - [Learn More About the FORTITUDE-HCM Clinical Trial.](https://4hcm.org/fortitude-hcm-trial/): FORTITUDE-HCM is a global clinical study evaluating whether ninerafaxstat, a new investigational drug, can help adults with symptomatic non-obstructive hypertrophic cardiomyopathy (nHCM) feel and function better in daily life. - [Former 23andMe CEO Outbids Regeneron for the Genetic Information Tech Company](https://4hcm.org/former-ceo-of-23andme-outbids-regeneron/): June 23, 2025 - [Learn About the Family and Medical Leave Act](https://4hcm.org/fmla/): The Family and Medical Leave Act (FMLA) protects your job while you're on leave. You can take leave if you're sick, caring for a family member, or having a new baby. The US Federal Government requires most employers to allow this. Some States offer additional coverage over the Federal requirements. - [Research into HCM in Cats.](https://4hcm.org/feline-hcm-scientific-advances/): Breakthroughs in veterinary cardiology are bringing new hope to cats living with hypertrophic cardiomyopathy (HCM). Researchers and clinicians continue to work tirelessly to better understand this complex disease and launch new therapies. - [Feline HCM – Hypertrophic Cardiomyopathy in Cats.](https://4hcm.org/feline-hcm-landing-page/): The HCMA is committed to improving the lives of our feline friends with HCM through community outreach and education. This page helps cat carers and supporters discover treatment advancements, current research, making a positive impact on feline cardiac health. - [Learn About Hypertrophic Cardiomyopathy in Cats.](https://4hcm.org/feline-hcm-journeys-revised/): Symptoms of Feline HCM vary and may include lethargy, difficulty breathing, or sudden episodes of lameness due to blood clots. Recognizing these signs early and seeking veterinary care can significantly impact outcomes. Regular check-ups for at-risk breeds are highly recommended. - [HCM Runs in Families, So Screening Is Important](https://4hcm.org/family-screening/): The following information is based on available medical research, publications, consensus documents and the entire body of scientific literature on screenings for HCM and basic management of the condition. - [Learn About HCM Spectrum Disorder, Fabry Disease.](https://4hcm.org/fabry/): Fabry Disease is rare. There are classic and late-onset forms. About half of Fabry Disease patients have heart involvement. Late-onset Fabry includes "HCM appearance" in half of male patients and a third of female patients. Fabry affects body parts including the kidneys, brain, gut, lungs, eyes, ears, and nerves. - [Learn How HCM Patients Can Exercise Safely](https://4hcm.org/exercise-hcm/): There is finally more clarity about exercise for HCM patients. Some doctors say, “Don’t do anything physical,” and others say, “Do whatever you want.” We can likely agree on one thing – they’re both wrong, and the best advice is somewhere in the middle. - [Event Details](https://4hcm.org/event-details/): It is a long established fact that a reader will be distracted by the readable content of a page when looking at its layout. The point of using Lorem Ipsum is that it has a more-or-less normal distribution of letters, as opposed to using 'Content here, content here', making it look like readable English. - [Emerald GEM Level: 40 Volunteer Hours](https://4hcm.org/emerald-gems-awards-winners-photo-gallery/): Our Emerald GEM Award Winners have given 40+ volunteer hours to HCMA projects Steve Ommen Reinhard Kirchhof Marion Van Sinttruije Maier Bianchi Lekeshia Henderson Karen Klimczak Gwen Mayes Fabian Metayer Debbie Hamilton Billur Dowse Deatrah Dubose Amy Blair - [Elizabeth T. McNamee Legislative Advocacy Committee](https://4hcm.org/advocacy-and-legislation/): There are many efforts at both the State and Federal levels related to HCM, Sudden Cardiac Arrest, Heart Health, Medical Devices, and related items that will be included on this page. This page is not intended to be a complete data source on all legislation in this space, but instead to highlight quality legislation that the HCMA supports and hopes to reproduce in other states. - [El-PFDD 2026](https://4hcm.org/el-pfdd-2026/): Patient lived experience will convey the importance and urgency of new therapies to the Food & Drug Administration (FDA), researchers, pharma, healthcare providers, and federal regulators, leveraging the unique power of patient experience. - [Get Personalized Help with Your HCM Diagnosis and Care.](https://4hcm.org/schedule-an-intake-call/): After completing a guided Intake Call, everyone who contacts the HCMA is provided a complimentary 15-minute consultation to answer questions about a new diagnosis, medication decisions, and/or surgery. - [Drill Dr. Heart: Cardiac Arrest Preparedness.](https://4hcm.org/drill-dr-heart-cardiac-arrest-preparedness/): Sudden cardiac arrest (SCA) is the abrupt loss of heart function, breathing, and consciousness. SCA usually results from a problem with the heart's electrical system, which disrupts the heart's pumping action and stops blood flow to your body or could be caused by an impact to the chest. - [Donations](https://4hcm.org/donations/): HCMA General Fund - [Learn About the Tests Used to Diagnose and Monitor HCM.](https://4hcm.org/diagnostic-journey/): Some people with HCM may not be properly diagnosed for months, years, or even decades because HCM can mimic other illnesses. Even with a family history of cardiac issues, some people with HCM are not referred to a cardiologist for family screenings. - [Learn About HCM Spectrum Disorder, Danon Disease.](https://4hcm.org/danon/): Danon Disease is very rare. Up to 4% of "HCM patients" actually have Danon Disease. Most people with Danon have heart problems. Danon also affects the liver, skeletal muscles, and eyes. It can cause developmental delay, learning disabilities, and mood disorders. - [Free CME for Physicians on Cardiac Amyloidosis](https://4hcm.org/could-it-be-cardiac-amyloidosis/): This continuing education activity is provided by AffinityCE and Hypertrophic Cardiomyopathy Association (HCMA). This activity provides continuing education credit for physicians, physician assistants, and nurse practitioners. - [Consent into the HCMA Patient Registry](https://4hcm.org/consent-webinar/): If you have received a letter asking you to sign a consent form allowing the HCMA to use your Intake data for research, but you need more information to make a decision, please sign up for a webinar below: ## Centers of Excellence - [University of Nebraska Medical Center](https://4hcm.org/centers/unmc/) - [Children’s Nebraska](https://4hcm.org/centers/childrens-nebraska/) - [Robert Wood Johnson University Hospital – Hypertrophic Cardiomyopathy Center of Excellence at Rutgers](https://4hcm.org/centers/rwj/): Program Coordinator: Nidara Fields-Hill, MPA, 732-418-8055. Patient Coordinator: Neepa Mathia, CMA, 732-235-5383. - [Yale New Haven Hospital](https://4hcm.org/centers/yale/): Yale New Haven Health enhances the lives of the people we serve by providing access to high value, patient-centered care in collaboration with those who share our values. - [Westchester Medical Center/ Westchester Heart and Vascular Institute](https://4hcm.org/centers/westchester/): Welcome to the Hypertrophic Cardiomyopathy (HCM) Program at Westchester Medical Center, the flagship of the WMCHealth Network. Our program is a fully comprehensive, patient-centered experience, and the only one based in Westchester County with a full service satellite office in… - [Wellstar Center for Cardiovascular Care](https://4hcm.org/centers/wellstar/) - [Washington University and Barnes-Jewish Hospital](https://4hcm.org/centers/washington/): Washington University School of Medicine is committed to advancing human health throughout the world. As noted leaders in patient care, research, and education, our outstanding faculty has contributed many discoveries and innovations to science and medicine since the school's founding… - [Virginia Mason Franciscan Health – Hypertrophic Cardiomyopathy Center](https://4hcm.org/centers/vmfh/) - [Vanderbilt Heart and Vascular Institute/Vanderbilt Medical Center](https://4hcm.org/centers/vanderbilt-tn/): HYPERTROPHIC CARDIOMYOPATHY: WHY CHOOSE VANDERBILT Recognized care Vanderbilt Heart and Vascular Institute is among the best heart programs in the nation and the top-ranked program in Tennessee, according to U.S. News & World Report. Vanderbilt University Medical Center is ranked… - [UW Medicine Hypertrophic Cardiomyopathy Clinic](https://4hcm.org/centers/uw/): The UW Medicine Hypertrophic Cardiomyopathy Clinic was founded in 2009 to improve the lives of patients with HCM throughout the Pacific Northwest. Our mission is to provide comprehensive, high-quality care for HCM patients and their families through guideline-directed care, personalized… - [UPMC Heart and Vascular Institute](https://4hcm.org/centers/upmc/): UPMC Heart and Vascular Institute (formerly Cardiac Consultants) focuses on the functions and disorders of the heart and circulatory system. According to the American Heart Association, 84 million people in the U.S. suffer from some form of cardiovascular disease, which… - [University of Virginia Health System](https://4hcm.org/centers/virginia/): UVA is Virginia's only designated HCM Center of Excellence by the Hypertrophic Cardiomyopathy Association. We offer cardiovascular screening, genetic testing and a range of treatment options to help you and your family manage congenital heart defects. - [University of Utah Health Science Center](https://4hcm.org/centers/utah/): University of Utah Health is an economic engine unlike any other in Utah. With more than 14,000 faculty and staff it is one of the state's largest employers and contributes millions of dollars in net tax revenue to Utah every… - [University of Texas Southwestern](https://4hcm.org/centers/utsw/): UT Southwestern Medical Center's heart specialists expertly diagnose and treat people with hypertrophic cardiomyopathy (HCM), a condition that can lead to irregular heart rhythms and heart failure. Combining skill and experience with the newest science-based tools and techniques, our cardiologists… - [University of Texas Health Science Center at San Antonio](https://4hcm.org/centers/utsa/): Our board-certified physicians represent more than 100 different types of medical specialties and subspecialties. We offer medical services throughout San Antonio and surrounding areas as well as in several cities in South Texas. We are an academic medical practice. This… - [University of Pennsylvania](https://4hcm.org/centers/upenn/): The Hospital of the University of Pennsylvania's world-class faculty and staff are dedicated to superior patient care, education and research for a better, healthier future. Innovative research coupled with responsive, hands-on care allows us to tailor treatment specifically to individual… - [University of Michigan Cardiovascular Center](https://4hcm.org/centers/michigan/): Cardiovascular disease is the number one killer of Americans today. The University of Michigan Samuel and Jean Frankel Cardiovascular Center is on the forefront of innovative, advanced efforts to combat the magnitude of cardiovascular disease. We're doing it with expert,… - [University of Kansas Health System](https://4hcm.org/centers/kansas/): KU Medical Center has a long-standing reputation for compassionate and state-of-the-art patient care in an academic medical center environment. Every day, our staff provides the highest-quality clinical treatment and care with a single purpose in mind: helping the patient. - [University of Iowa Hospitals and Clinics](https://4hcm.org/centers/uiowa/): Our primary and specialty care is provided by experts from all medical specialties, attracting patients from around the world. We offer our care in convenient, comfortable settings, using the most advanced approaches and with the best outcomes as our goal.… - [University of Colorado Hospital](https://4hcm.org/centers/university-of-colorado-hospital/): Overview:The University of Colorado Hospital (UCH) is a cornerstone of UCHealth, functioning as a center of quaternary care for heart and vascular disease. The Hypertrophic Cardiomyopathy Program provides multidisciplinary care across the spectrum of the disease, with all adult specialists… - [UCSF Medical Center](https://4hcm.org/centers/ucsf/): UCSF Health's mission, vision and values convey the reasons we exist as an organization, what we aspire to as an organization and the way we will work to get there. They are a unifying force that link all of us… - [UCLA Ronald Reagan Medical Center](https://4hcm.org/centers/ucla/): Every floor of Ronald Reagan UCLA Medical Center is dedicated to a particular specialty and equipped with all of the necessary support equipment and supplies. Every floor has its own satellite pharmacy, dialysis storage, respiratory therapy workrooms, and resident doctor… - [UC San Diego Health](https://4hcm.org/centers/ucsd/): UC San Diego Health is one of just a few medical centers in California designated as a Center of Excellence by the Hypertrophic Cardiomyopathy Association . Led by Drs. Jorge Silva Enciso and Eric Adler, our multidisciplinary team provides comprehensive… - [The Christ Hospital Health Network](https://4hcm.org/centers/christhosp/): The Hypertrophic Cardiomyopathy (HCM) Center at The Christ Hospital is the region’s first dedicated HCM Center. We offer comprehensive care for adults with HCM, a heart condition that causes your heart's walls to thicken and can lead to heart failure.… - [Tampa General Hospital](https://4hcm.org/centers/tampageneral/): Tampa General Hospital is a private not-for-profit hospital and is one of the most comprehensive medical facilities in West Central Florida. Consistently recognized for world-class care, TGH partners with the USF Health Morsani College of Medicine to pioneer breakthrough treatments,… - [Stanford University Medical Center](https://4hcm.org/centers/stanford-2/): A leader in the biomedical revolution, Stanford Medicine has a long tradition of leadership in pioneering research, creative teaching protocols and effective clinical therapies. Our close proximity to the resources of the university - including the Schools of Business, Law,… - [Scripps Clinic](https://4hcm.org/centers/scripps-2/): You can trust your heart to Scripps. A nationally recognized heart care leader, we are consistently ranked by U.S. News & World Report as one of America's Best Hospitals for cardiology and heart surgery. Scripps cardiologists are a top choice… - [Rochester Regional Health](https://4hcm.org/centers/rochester/): The Sands-Constellation Heart Institute is a network of heart care experts located throughout the Rochester area and Central and Western New York regions, working together to provide each and every patient with the latest and best possible cardiac care. We… - [Piedmont Heart](https://4hcm.org/centers/piedmont/): Piedmont’s Hypertrophic Cardiomyopathy Program offers complete multidisciplinary evaluation and treatment for patients with hypertrophic cardiomyopathy, from medical to surgical treatment options. - [Penn State Health – Milton S. Hershey Medical Center Heart and Vascular Institute](https://4hcm.org/centers/penn/): Penn State Heart and Vascular Institute is a leader in providing advanced, coordinated care for cardiovascular disease in the region. We're home to the region's only heart transplant center. We combine advanced expertise, sophisticated technology and the latest proven treatments… - [Oregon Health & Science University](https://4hcm.org/centers/oregon/): Our vision is to partner to make Oregon a national leader in health and science innovation for the purpose of improving the health and well-being of all patients living with hypertrophic cardiomyopathy. As the only Center of Excellence in the… - [NYU Langone Medical Center](https://4hcm.org/centers/langone/): The heart and vascular specialists at our NYU Langone Heart Programs are leaders in cardiology, cardiac surgery, vascular surgery, and advanced diagnostic imaging-not only in New York City, but also around the world. Our physicians work as a team to… - [NYU Langone Hospital Long Island](https://4hcm.org/centers/winthrop/): NYU Langone Hospital-Long Island, formerly NYU Winthrop Hospital, is the Long Island base of NYU Langone Health and is ranked by U.S. News & World Report as one of the top-10 New York metro-area hospitals. The hospital was founded in… - [Northwestern Medicine Bluhm Cardiovascular Institute](https://4hcm.org/centers/bluhm/): If you or someone you love is diagnosed with hypertrophic cardiomyopathy, Northwestern Medicine Bluhm Cardiovascular Institute offers leading-edge diagnostic testing, as well as advanced medical and surgical treatment options. We have invested in groundbreaking services to deliver comprehensive care for… - [Northwell Health – North Shore University Hospital](https://4hcm.org/centers/northshore/): Northwell Health’s Hypertrophic Cardiomyopathy program is located at North Shore University Hospital (NSUH) in Manhasset, New York. NSUH is a flagship hospital within the Northwell Health system and a major teaching hospital and a Level I trauma center providing comprehensive… - [Morristown Medical Center- HCM Center](https://4hcm.org/centers/morristown-2/): August 2026 Update: The Morristown HCM Program was established in 2014 through a collaboration with the Tufts Medical Center HCM Center under the leadership of Martin Maron, MD. As the program expanded, Ethan Rowin, MD, joined the leadership team, helping… - [Monroe Carell Jr. Children’s Hospital at Vanderbilt](https://4hcm.org/centers/monroe-carrell-vanderbilt/): HYPERTROPHIC CARDIOMYOPATHY: WHY CHOOSE VANDERBILT The Pediatric Cardiomyopathy Program at Monroe Carell Jr. Children’s Hospital at Vanderbilt is one of only a few such programs in Tennessee. We seek to provide comprehensive cardiovascular care for children and families with cardiomyopathy.… - [Methodist DeBakey Heart & Vascular Center](https://4hcm.org/centers/methodist/): WORLD-RENOWNED TREATMENT FOR HCM Houston Methodist has a history of excellence in treating HCM. In 1996, we were the first hospital in the U.S. to perform alcohol septal ablation, a catheter-based procedure that is now an important treatment option for… - [Mayo Clinic Scottsdale](https://4hcm.org/centers/scottsdale/) - [Mayo Clinic Jacksonville](https://4hcm.org/centers/jacksonville/) - [Mayo Clinic](https://4hcm.org/centers/mayo/): Welcome to Mayo Clinic in Rochester, Minnesota, the original and largest Mayo Clinic campus. Located in the heart of Rochester, Minnesota - a dynamic city just 90 minutes south of the Twin Cities of Minneapolis and St. Paul - Mayo… - [MaineHealth Hypertrophic Cardiomyopathy Program](https://4hcm.org/centers/mainehealth/): The MaineHealth Hypertrophic Cardiomyopathy (HCM) Center is the first and only HCMA‑recognized Center of Excellence in Northern New England. Founded in 2017, the program is dedicated to delivering guideline‑directed, patient‑centered care for individuals and families affected by HCM. Based in… - [Le Bonheur Children’s Hospital](https://4hcm.org/centers/lebonheur/): Le Bonheur has six specially-trained, dedicated cardiologists providing complementary perspectives. Le Bonheur is one of the few HCM centers in the country dedicated to the care of pediatric patients with cardiomyopathies. Le Bonheur provides precision medicine in the management of… - [Lahey Hypertrophic Cardiomyopathy Center](https://4hcm.org/centers/lahey/): The right place for hypertrophic cardiomyopathy care Lahey Hospital & Medical Center is proud to launch the Hypertrophic Cardiomyopathy (HCM) Center, offering highly personalized care and leading-edge treatments to achieve a good quality of life and longevity for our patients… - [Johns Hopkins All Children’s Hospital](https://4hcm.org/centers/jhach/): The Johns Hopkins All Children’s Hospital Hypertrophic Cardiomyopathy Program (HCM) is led by Program Director Alfred Asante-Korang, MD, who oversees a highly skilled multidisciplinary team including pediatric cardiology, radiology, genetics, advanced heart failure and transplantation, electrophysiology, interventional cardiology, and cardiac… - [Johns Hopkins Hypertrophic Cardiomyopathy Center](https://4hcm.org/centers/hopkins/): The Johns Hopkins Medicine Hypertrophic Cardiomyopathy Program (HCM) is led by Program Director Jose Madrazo, MD, who oversees a highly skilled multidisciplinary team including pediatric cardiology, radiology, genetics, advanced heart failure and transplantation, electrophysiology, interventional cardiology, and cardiac surgery. This… - [Intermountain Medical Center](https://4hcm.org/centers/intermountain/): Intermountain Medical Center serves as the flagship medical facility for Intermountain Healthcare, improving the science of medicine, the spirit of caring, and the miracle of healing in state-of-the-art facilities with the latest technology. We have a team of cardiologists with… - [Indiana University Health Methodist](https://4hcm.org/centers/indiana/): IU Health cardiologists are dedicated to advancing medical knowledge and improving care for hypertrophic cardiomyopathy through innovative research at the IU School of Medicine. - [Emory University Hospital-Children’s Healthcare of Atlanta Cardiology (formerly Sibley Heart Center)](https://4hcm.org/centers/childrenscardiologyatlanta/): Our Hypertrophic Cardiomyopathy Program diagnoses and manages more than 300 patients from before birth to age 21 who either currently have HCM or have a family history of HCM. Our program is one of only two in the U.S. that… - [Emory University Hospital-Adult](https://4hcm.org/centers/emorya/): Staffed exclusively by Emory University School of Medicine faculty who also are members of the Emory Clinic, Emory University Hospital is one of the nation's leading hospitals in cardiology and heart surgery, cancer, neurology and more. In 2014, Emory University… - [Duke University Medical Center](https://4hcm.org/centers/duke/): As a world-class academic and health care system, Duke Health strives to transform medicine and health locally and globally through innovative scientific research, rapid translation of breakthrough discoveries, educating future clinical and scientific leaders, advocating and practicing evidence-based medicine to… - [Corewell Health West](https://4hcm.org/centers/corewell/): At Corewell Health West, we strive to deliver personalized health made simple, affordable, and exceptional. It's a high bar. Yet with every day and every patient we meet, we are proving that extraordinary care is a goal worth achieving. Corewell… - [Columbia University Hypertrophic Cardiomyopathy Center](https://4hcm.org/centers/columbia/): The Columbia Hypertrophic Cardiomyopathy (HCM) Center has the depth and breadth of experience to provide seamless care for patients and their families at every age and stage of this disease. Our multidisciplinary team creates a comprehensive and individualized approach for… - [Cleveland Clinic- Weston](https://4hcm.org/centers/cleveland3/): Cleveland Clinic Florida is a nonprofit, multi-specialty healthcare provider that integrates clinical and hospital care with research and education. The Florida region now includes Cleveland Clinic Indian River Hospital, Cleveland Clinic Martin Health, and Cleveland Clinic Weston Hospital, with five… - [Cleveland Clinic Foundation-Pediatrics](https://4hcm.org/centers/cleveland2/): Cleveland Clinic Children's offers three facilities dedicated to the medical, surgical and rehabilitative care of infants, children and adolescents. Our Inpatient Hospital and Outpatient Center are both located at our main campus in Cleveland, OH. We also offer inpatient and… - [Cleveland Clinic Foundation-Adult](https://4hcm.org/centers/cleveland1/): Cleveland Clinic's Hypertrophic Cardiomyopathy Center is a multidisciplinary specialty treatment group dedicated to the diagnosis and treatment of HCM in individuals and family members. We bring together clinicians that specialize in HCM, including physicians and nurses from Cardiovascular Medicine, Genetics,… - [Brigham and Women’s Hospital -Cardiovascular Division](https://4hcm.org/centers/brigham-2/): For nearly a century, Brigham and Women's Hospital has been at the epicenter for innovation and discovery in cardiovascular care and research. Today, our Heart & Vascular Center continues to be poised for the future and will lead the way… - [Atrium Health Sanger Heart & Vascular Institute](https://4hcm.org/centers/atrium-2/): A new era of healthcare was ushered in today as Atrium Health and Wake Forest Baptist Health, including Wake Forest School of Medicine, officially joined together as a single enterprise, Atrium Health. Both health systems are renowned for their clinical… - [Ascension Saint Thomas Heart](https://4hcm.org/centers/ascension-saint-thomas-heart/): Ascension Saint Thomas Heart is one of the most experienced cardiovascular medicine programs in the nation. Our cardiologists and surgeons have treated patients with the latest cutting-edge therapies - ranging from remote heart failure monitoring, robotically assisted minimally invasive mitral… - [Allegheny General Hospital](https://4hcm.org/centers/agh/): AHN is a multi-disciplinary team of cardiovascular specialists trained in diagnosing and treating hypertrophic cardiomyopathy. The AHN team will provide patients with a comprehensive assessment and conduct a diagnostic test to determine the most appropriate therapy. Team members collaborate to… - [Advocate Aurora St. Luke’s Medical Center](https://4hcm.org/centers/aurora/): We combine precision medicine and compassionate care to support individuals and families affected by hypertrophic cardiomyopathy. Our dedicated team brings together advanced diagnostics, thoughtful treatment planning, and eliable, long-term support – all driven by a commitment to exceptional quality and… - [AdventHealth Orlando](https://4hcm.org/centers/adventhealth/): An Expert Collaboration Your whole health is our priority. The best way to support you in body, mind and spirit is to work together across our areas of expertise and take a highly coordinated approach. With our comprehensive program you… ## Travel Guides - [University of Michigan – Adult](https://4hcm.org/travel-guides/university-of-michigan-health/): Ann Arbor, Michigan is situated along the Huron River, on the state’s Southeast Lower Peninsula. Located 45 miles west of Detroit and the Great Lake Erie, Ann Arbor is much closer to Canada than it is to Chicago. Since its founding, the culture and industry of the city has been shaped by the University of Michigan’s presence. The Main Campus, which includes the Medical School (founded in 1850) and the North Campus make it a vibrant college town. The North Campus is home to the Gerald R. Ford Presidential Library. Michigan Stadium, home of the U of M Wolverines, is called “The Big House” because it is the largest football stadium in the country. Ann Arbor is nicknamed A2 or A-squared, as well as “Tree Town,” due to its extensive forests and parks. - [Penn State Hospital – Adult](https://4hcm.org/travel-guides/penn-state-health-hershey-medical-center/): Penn State Health - Milton S. Hershey Medical Center Heart and Vascular Institute - [Mayo Clinic](https://4hcm.org/travel-guides/mayo-clinic/): The city of Rochester, MN revolves around the Mayo Clinic and is often called “Med City,” resulting in an abundance of options for lodging, food, and activities for patients and their travel companions. Minnesota is the land of 10,000 lakes, and Rochester is tucked into the southeast corner of the state, close to both Wisconsin and Iowa. While the spring, summer, and fall at the Mayo Clinic provide for some milder temperatures, visitors at all times of year, but particularly during the harsh Minnesota winter, should come prepared to bundle up. Don’t forget to check the weather a few days before you visit. There is a system of tunnels on the Downtown Campus of the Mayo Clinic, called the Skyway/Subway, that connects several of the Clinic’s main buildings to a food court, shops, and a number of hotels. If you stay in one of those hotels, you can get to your COE appointment without venturing outside. - [Lahey Hospital and Medical Center](https://4hcm.org/travel-guides/lahey-hospital-and-medical-center/): Burlington, MA is situated 12 miles northwest of downtown Boston, at the intersection of Routes I-95/128, I-93, and 3. At the heart of New England, the local area is known for its history, educational institutions, and culture. Burlington’s town motto is “Where technology goes to work,” reflecting its reputation as a hub for that industry. Shopping is also a focal point, with 3rd Ave, Wayside Commons, and the second largest shopping center in Massachusetts, the Burlington Mall, where “Paul Blart: Mall Cop” (starring Kevin James) was filmed. Burlington’s weather is seasonal, with typically cold and snowy Winters, rainy but beautiful Springs, hot and humid Summers, and spectacular Falls with cooler temperatures and stunning leaves. - [Emory University Hospital – Adult](https://4hcm.org/travel-guides/emory-adult/): Atlanta, the capital of the state of Georgia, rests in the foothills of the Appalachian Mountains, 1000 feet above sea level, in the northwest portion of the state. It derives its name from the Western and Atlantic Railroad, which made the city a major transportation hub. Hartsfield-Jackson Atlanta International Airport maintains that designation, as the busiest airport in the world and a major hub for Delta Airlines. During the Civil War’s Battle of Atlanta, most of the city was burned to the ground; when it was rebuilt during the Reconstruction period, the architecture more closely resembled northern cities than its neighbors in the south. Atlanta was the birthplace of Coca-Cola, Martin Luther King, Jr., and “Gone With the Wind” novelist Margaret Mitchell. The film based on her book, which depicts the Battle of Atlanta, had its premiere at Atlanta’s Loew’s Grand Theatre in 1939, with stars Vivien Leigh and Clark Gable in attendance. Hosting the 1996 Summer Olympics brought great change to Atlanta, from transportation to the economy and demographics. It is home to the MLB’s Braves, the NBA’s Hawks, and the NFL’s Falcons, as well as the Georgia Aquarium, which is the world’s largest. Although Georgia is called the Peach State, you won’t find many peach trees in Atlanta; but you will find more than 70 streets, roads, and avenues with the word “peach” in their names. The most famous is the Downtown thoroughfare, Peachtree Street. - [Cleveland Clinic Foundation-Adult](https://4hcm.org/travel-guides/cleveland-clinic/): Cleveland is a vibrant midwestern city, located in the northeast part of Ohio on the southern shore of Lake Erie. Local attractions include: The Rock and Roll Hall of Fame; Playhouse Square performing arts center; The Cleveland Museum of Art; Cleveland Botanical Garden; and the Cleveland Clinic itself. Major sports teams, with stadiums just a few miles from the Clinic, are the Browns (football), Cavaliers (basketball), and Guardians (baseball). - [Advocate Aurora St Luke’s Adult](https://4hcm.org/travel-guides/aurora-st-luke/): Milwaukee, Wisconsin, the “Great Place on a Great Lake,” sits along the western shores of Lake Michigan, 90 miles north of Chicago, Illinois. Three rivers meet in Milwaukee: the Milwaukee, the Menomonee, and the Kinnickinnic. German immigrants were among the earliest European settlers to this region, making the local breweries the most popular culinary attraction, alongside cheese curds. Downtown Milwaukee features a popular RiverWalk, with shops, restaurants, art installations, and even a bronze statue of “The Fonz” (Henry Winkler from “Happy Days,” which was set in MKE). The city hosts more than 100 festivals each year and is home to the NBA’s Bucks and the MLB’s Brewers. - [Allegheny General Hospital Adult](https://4hcm.org/travel-guides/allegheny-general/): Pittsburgh, Pennsylvania is located in the southwestern portion of the state, and this 300,000-person city is the largest in Appalachia. Three rivers meet in the center of Pittsburgh: The Allegheny and The Monongahela (The Mon), which join to form The Ohio River. As a result, it is referred to as the “City of Bridges,” with 446 in total…more than Venice, Italy! Known largely for its key role in the steel industry during the 19th and 20th centuries, modern Pittsburgh is also home to advances in technology and medicine. Carnegie Mellon and other universities provide educational opportunities, while attractions like the Andy Warhol Museum, the NFL’s Steelers, and the NHL’s Penguins offer great cultural experiences. - [AdventHealth Orlando](https://4hcm.org/travel-guides/adventhealth-orlando/): Orlando, Florida is the seat of Orange County in Central Florida. It is just about exactly halfway between the Atlantic Ocean and the Gulf of Mexico. This tourist-friendly city is most well-known for its 100+ theme parks and attractions. Walt Disney’s announcement in the mid-1960s that his second Magic Kingdom would be in this swampy, lake-filled area of the Sunshine State drew residents and tourists alike, contributing to the development of more than 30 neighborhoods and communities. The first local theme park was actually Gatorland, which opened in 1949, but Walt Disney World, Universal Studios, Sea World, and others are the modern focus of locals and travelers. International Drive and Universal Boulevard, off of the busy I-4, make up the central district for Orlando visitors, but there is a traditional downtown Orlando for locals, which is separate from the theme parks. University of Central Florida makes its home there, and hometown 90s boy band The Backstreet Boys took their name from downtown Orlando’s Backstreet Market. ## Faces of HCM - [Wyatt Christopher Jackson](https://4hcm.org/faces/wyatt-christopher-jackson/): Wyatt Christopher Jackson, 18, of Mesa AZ passed away suddenly in his sleep on August 16,2020 from a genetic heart condition (hypertrophic cardiomyopathy). - [Willie Mclaughlin](https://4hcm.org/faces/willie-mclaughlin/): I first discovered that I had a heart problem in the late 1980s. This was a few years after I had stopped training and competing as an Olympic-caliber track and field athlete. I didn’t have any symptoms while competing in college. However, a few years later, during a routine check-up, my doctor told me that I had “cardiomyopathy”. I was told that there was nothing that I could do about it and that I should just keep an eye on it. - [William “Will” Massey](https://4hcm.org/faces/william-massey/): The HCMA is offering a preamble to the memorial of Will Massey - it is our hope that his story will save lives. - [Victoria Karl](https://4hcm.org/faces/victoria-karl/): My name is Victoria Karl and I live in St. Louis, Missouri. In August 2017 I was diagnosed with Obstructive Hypertrophic Cardiomyopathy, this is my story: - [Victoria Collins](https://4hcm.org/faces/victoria-collins/): Victoria was diagnosed with Hypertrophic Cardiomyopathy (HCM) at 16. She was asymptomatic at the time of her diagnosis. - [Vi Tang](https://4hcm.org/faces/vi-tang/): Vi was diagnosed with hypertrophic cardiomyopathy in Vietnam at the age of 15. He was at a routine doctor's appointment when his doctor heard a loud heart murmur and asked him if he had a congenital heart problem, which confused him because it was the first time anyone had said anything about it. The doctor sent him for an echocardiogram and then to a cardiologist. Only 24 hours passed between the time the murmur was heard and a diagnosis of HCM. - [Tracy Argandona](https://4hcm.org/faces/tracy-argandona/): I live in the DC area, in Alexandria, Virginia with my husband and my 9-year-old daughter. I learned that I have HCM three years ago and since then I have been on a variety of medications and had two surgeries in an attempt to treat my condition and feel better. - [Thomas Forsyth](https://4hcm.org/faces/thomas-forsyth/): When he was young, Thomas was a strong athlete, running track and playing football. At 25, he was diagnosed with a heart murmur, but no further treatment was advised and he continued his active lifestyle. - [Sharon Safran](https://4hcm.org/faces/sharon-safran/): In loving memory of Sharon Safran - [Scott Popjes](https://4hcm.org/faces/scott-popjes/): I am a husband, father of two, and a two-time Emmy nominated non-fiction television producer, and filmmaker. I was first diagnosed with hypertrophic cardiomyopathy (HCM) at 23 years old in 1989. This was right after my father was also diagnosed with the same condition. I was mostly symptom-free for the first five years but later experienced my first noticeable symptom of supraventricular tachycardia (a fast heartbeat). - [Samuel Robert Adukiewicz](https://4hcm.org/faces/samuel-robert-adukiewicz/): Samuel's wife, Doris, shares his story to impress the importance of seeking care at an HCMA-recognized Center of Excellence Program - [Samuel Morris](https://4hcm.org/faces/samuel-morris/): Sam recalls being diagnosed at age 13 with non-obstructed hypertrophic cardiomyopathy (HCM) when he failed his physical to play junior high sports. Pre-diagnosis, he recalls being the last or one of the last ones to finish school PE activities, even though he wasn't the most out of shape among his classmates. He was also short of breath during basketball games which everyone thought was because he was just not trying as hard. - [Rush Roberts](https://4hcm.org/faces/rush-roberts/): I was asymptomatic. I only got tested because my dad had hypertrophic cardiomyopathy (HCM) and I knew it could be passed down. - [Rosemary Conlon](https://4hcm.org/faces/rosemary-conlon/): Rosemary had been a cardiac nurse years before her own diagnosis of hypertrophic cardiomyopathy (HCM), yet she had never even heard of the condition until she was told she had it. - [Raimone Roberts](https://4hcm.org/faces/raimone-roberts/): During his life, Raimone was seemingly healthy. He was a runner, worked out regularly, played tennis, and had even been in and graduated from the Airforce Academy. Multiple physicals had never revealed any issues with his heart. Even after he was excluded from flying (his passion was to be a pilot) because he would become ill during flight training, medical exams did not reveal his HCM, and no effort was put forth to determine why this was happening. To date, there are no family members that they know of with an HCM diagnosis but they do know Raimone’s maternal grandmother had a pacemaker and his mother had issues with atrial fibrillation. - [Priscilla Williams](https://4hcm.org/faces/priscilla-williams/): Priscilla is a retired preschool teacher who is married and living in New York. Priscilla has hypertrophic cardiomyopathy (HCM), which made taking a shower, a flight of stairs, and walking from her car to a building a challenge. - [Nadia Morgan](https://4hcm.org/faces/nadia-morgan/): I was diagnosed with hypertrophic cardiomyopathy (HCM) at age 28 because my doctor heard a heart murmur. Not long after that, I became pregnant with my second child. Because of this, I needed to go to a high-risk OB-GYN doctor during my pregnancy, even though I didn’t start having symptoms of HCM until I was 35. - [Armonnie (Monnie) Hawkins](https://4hcm.org/faces/monnie-hawkins/): Armonnie (Monnie) is a 13-year-old boy from Canton, Ohio, diagnosed with a heart murmur at birth. He was born prematurely (at 30 weeks) in 2009 and spent the first days of his life in the NIC Unit. Doctors assured his mother, Nicole, that he would "grow out of it." - [Missy Hall Nicholson](https://4hcm.org/faces/missy-hall-nicholson/): My HCM journey began on January 4, 2014 but my diagnosis of HCM took 2 more years. I was getting ready to head to work, and I felt my heart start racing. I was still feeling ok, just annoyed at this point, so I headed to work. - [Mike Papale](https://4hcm.org/faces/mike-papale/): Can you imagine waking up in a hospital in Connecticut after being unconscious for three days and being told you had suffered two episodes of sudden cardiac arrest (SCA)? This would be confusing and scary for anyone, but especially for a 17-year old high school student. - [Michael Sinclair](https://4hcm.org/faces/michael-sinclair/): Michael was diagnosed with Obstructive Hypertrophic Cardiomyopathy (HCM) in 2019. - [Michael Duddy](https://4hcm.org/faces/michael-duddy/): Michael has a strong family history of HCM. His father was diagnosed with it, his paternal aunt had HCM (and went on to have a heart transplant), and her son (Michael’s cousin) also has this condition. Michael was diagnosed with hypertrophic cardiomyopathy (HCM) when he was 12 years old. His diagnosis came after his younger brother (age 10 at the time) was diagnosed during a routine checkup. This younger brother, only a few short years after his diagnosis, passed away on the playground at the age of 13 from a cardiac arrest. - [Meredith Everhart](https://4hcm.org/faces/meredith-everhart/): I first noticed symptoms of severe fatigue and palpitations in 2007 when I was around 21 years old. No matter how much sleep I received, most mornings while driving to work I was extremely tired, to the point that I felt like I could fall asleep behind the wheel; coffee didn’t even help. I became more worried when I started noticing palpitations for the first time. After having a “black out” moment and swerving slightly off the road, I knew something wasn’t right. In reality, I look back now and think, “why the hell would you wait so long to see a doctor?”, then I remember 21-year-old Meredith was carefree and didn’t have any anxiety at that time. I may have also procrastinated on things in my personal life, even my health. - [Maya Warren](https://4hcm.org/faces/maya-warren/): Maya had always led an active lifestyle, enjoying yoga, roller skating, and working out regularly. In 2005, when Maya was 30, she started experiencing heart palpitations, initially attributing this to work stress and too much caffeine. - [Marsha Rosenberg](https://4hcm.org/faces/marsha-rosenberg/): I have been having troubling heart symptoms since I was in my 50s, and I didn’t have the physical ability others did in high school (I was always last in the class when it came to exercise), but I wasn’t diagnosed with hypertrophic cardiomyopathy for many years after that. - [Marlin Colon](https://4hcm.org/faces/marlin-colon/): Marlin is a 35-year-old mother of two who currently lives in Florida with her husband, Edgar. - [Marla Kennedy](https://4hcm.org/faces/marla-kennedy/): Marla received a diagnosis of hypertrophic cardiomyopathy (HCM) at age 59. Her mother had a heart attack around the same age but did not share any information with Marla because she assumed she was alright. - [Lynda Neuhausen](https://4hcm.org/faces/lynda-neuhausen/): When I was 39 years old, my family and I were heading to our nosebleed seats at a baseball game. When we reached our seats, it felt as if my heart was jumping out of my chest. I was gasping for breath, my left arm had gone numb, and my face was ghostly grey. I thought I was having a heart attack. I was married with three young children and in my last year of law school. - [Lori Flanigan](https://4hcm.org/faces/lori-flanigan/): January 9, 1959 - June 16, 1995Lori’s life reminds me of a butterfly – beautiful and short-lived. She has been gone since 1995 however her spirit is what drives the HCMA, and because of her life and death, so many have been helped. - [Lisa Vecchione](https://4hcm.org/faces/lisa-vecchione/): How breaking my nose may have saved my life: Lisa Vecchione is from Springfield, New Jersey. She was diagnosed with HCM at the age of 31. She found out she had HCM when she had broken her nose at work and went to her doctor where they noticed she hadn’t had a physical exam in a while. She explained that breaking her nose potentially saved her life. - [Lisa Salberg](https://4hcm.org/faces/lisa-salberg/): I was 12 years old, and standing in the school nurse's office waiting to get my heart listened to. The doctor, a little old man, sat on a round stool looking bored. As the stethoscope rose to my chest – suddenly he looked interested, maybe even a little panicked, he called over the nurse to take a listen. I had a pretty good idea of what was happening, and it was frightening but, kids were watching and I had to stay cool. - [Linda Morzillo](https://4hcm.org/faces/linda-morzillo/): During a routine checkup at our family doctor's office during the early 2000s, my doctor heard a heart murmur for the first time. A couple of years later, when the murmur had not gone away on its own, I was referred to a local cardiology group in Saratoga Springs. - [Leigh Maupin](https://4hcm.org/faces/leigh-maupin/): "My hope is that through awareness, future generations will have easier access to the treatments they need. I hope pediatricians will know the signs of HCM and monitor children with or without a family history of HCM." - [Lauren Donoghue Cinelli](https://4hcm.org/faces/lauren-donoghue-cinelli/): My name is Lauren Donoghue-Cinelli, I’m forty years old, and from the Boston, MA suburbs. I’m married and work in marketing for an events company. I live a mostly “normal” life. I call it “normal-ish”. - [Larry Flanigan](https://4hcm.org/faces/larry-flanigan/): Husband, father, grandfather, fisherman, golfer, fireman, and first aid/EMT - [Kristen Arechiga](https://4hcm.org/faces/kristen-arechiga/): I was diagnosed with Hypertrophic Cardiomyopathy in 1983, at 16 months old. I suspect that other family members on my mother's side may have had it but were never officially diagnosed. As a baby, I started turning blue, sweating, and crying excessively. My parents knew something was wrong but couldn’t get any doctors to listen. Of course, my parents and grandparents would not give up, so they took me to a cardiologist in Houston, Texas. The cardiologist told us that she was just learning about a congenital heart disease called Idiopathic Hypertrophic Subaortic Stenosis. This is an outdated term for what we now call Hypertrophic Cardiomyopathy. The doctor needed to run more tests to confirm this condition, and not long after, I was officially diagnosed. - [Kim Walsh](https://4hcm.org/faces/kim-walsh/): Growing up, Kim Walsh was very athletic. She recalls that many times while doing physical activity, she would have difficulty keeping up with her peers because she would struggle with shortness of breath, lightheadedness, heart palpitations, and fatigue. Kim never thought her heart was the reason; she attributed it to being slightly overweight. - [Kent Sperry](https://4hcm.org/faces/kent-sperry/): When I was diagnosed with HCM, at the age of 37, my wife was pregnant with our 5th child. The diagnosis hit me very hard when I learned that the condition was passed genetically and each of my children had a 50% chance of inheriting it. It was frightening to consider this reality and what it could mean for them. - [Kelly Sidebottom](https://4hcm.org/faces/kelly-sidebottom/): My obvious symptoms started with my second pregnancy when I went into active labor at 26 weeks. Up to then, I was clueless as to how HCM was affecting our lives. - [Kay Julius](https://4hcm.org/faces/kay-julius/): HCM, it's a family thing.In 1982, my mom was diagnosed with hypertrophic cardiomyopathy (HCM); she was in her early 40s. In 1985, when I was 14, we did the right thing; I was tested. My echocardiogram results were negative for HCM, and we were told I was in the clear and nothing else needed to be done. We have learned a great deal about HCM since the 1980s! - [Karen Newstrom](https://4hcm.org/faces/karen-newstrom/): Karen’s family has a long history of HCM and sudden cardiac arrest. There are four generations confirmed with a diagnosis of HCM and suspicion of cases traced back another generation or two. Karen herself was diagnosed in 2003 at age 44. She received an implantable cardioverter defibrillator (ICD) immediately after diagnosis, despite being asymptomatic, because of her strong family history. - [Justin Alan Vigile](https://4hcm.org/faces/justin-vigile/): Justin Alan Vigile, age 35, passed away suddenly on Monday, July 28, 2025, in Dallas, TX. Born on September 25, 1989, in Philadelphia, PA, he lived most of his life in Levittown, PA. He was a 2008 Neshaminy High School graduate. Justin resided in Fort Worth, TX, at the time of his death. - [Julia Mosher](https://4hcm.org/faces/julia-mosher/): They did not go into much detail, causing Julia to believe that she was just lazy and not that her symptoms resulted from a larger condition. Luckily her pediatrician recalled that Julia’s grandfather had a heart condition (then referred to as IHSS) and that her mother Risa had tightness in the chest during her pregnancies. The doctor advised that Julia see a more specialized cardiologist who gave her diagnosis of HCM. Julia’s younger brother also has HCM and is learning, just like her, how to live with it and how to adjust his lifestyle accordingly. - [Joseph Caruso](https://4hcm.org/faces/joseph-caruso/): My family means everything to me. For a long time, I couldn’t keep up with them and was afraid to make future plans. Even planning a vacation seemed impossible. - [John Orlando](https://4hcm.org/faces/john-orlando/): My HCM story began when I was 25, during a routine visit with a new doctor who discovered a heart murmur. - [Jillian Blair](https://4hcm.org/faces/jillian-blair/): How a doctor knowing the right questions to ask could have saved Jillian's life: - [Heather Wartenberg](https://4hcm.org/faces/heather-wartenberg/): Doctors had always given one explanation or another for her symptoms, but nothing related to her heart. - [Garret Lyons](https://4hcm.org/faces/garret-lyons/): Garrett Lyons of Colorado passed away peacefully into our lord's loving protective graces in 2022. - [Elizabeth Wessman](https://4hcm.org/faces/elizabeth-wessman/): Hypertrophic Cardiomyopathy - “It took me three days to even learn how to say it!”.Elizabeth Wessman has lived all over the United States, most recently in Hawaii, and is originally from Boston, MA. She was diagnosed with Hypertrophic Cardiomyopathy (HCM) in January of 2022 at the age of 51. Looking back now, she feels like she may have had HCM all her life. - [Dominic Venti](https://4hcm.org/faces/dominic-venti/): For Dominic, life before his HCM diagnosis was fairly normal. He was active and enjoyed being outdoors. However, for any kind of distance running, he would get easily winded and his heart would be pounding, and he wouldn’t know why. “I could walk forever, but anytime I would amp up my physical exertion, I felt like I was going to pass out or my chest was going to burst.” Though his life seemed normal, he did notice things that made him different from other people. - [Deric Wormley](https://4hcm.org/faces/deric-wormley/): On October 30th, 2015 at the age of 49, I was on my way to a meeting at the police department (I’m a police detective), and as I walked through the roll-call room I just dropped. I was not breathing, no pulse, no nothing. - [Derek Armstead](https://4hcm.org/faces/derek-armstead/): Derek Armstead Sr. was visiting his fiancé's sister's house in Virginia Beach, Virginia with his fiancé, Jasmine, her then 6 year-old daughter, Peyton, and their 6-month-old son, Derek Jr. Two of Jasmine’s young nephews asked Derek to play box with them. Derek was playing with the kids when he suddenly lost consciousness. - [Dennis Passis](https://4hcm.org/faces/dennis-passis/): 77 years old when diagnosed and now more active at 80 with COE care and Camzyos - [Debra Rafson](https://4hcm.org/faces/debra-rafson/): I was asked by a pulmonologist, "Has anyone ever told you that you have a REALLY pronounced heart murmur?" - [Deborah Capiro](https://4hcm.org/faces/deborah-capiro/): Deborah was diagnosed with nonobstructive HCM in February 2020 at the age of 28 during a yearly checkup when her doctor heard a heart murmur. - [Debbie Hamilton](https://4hcm.org/faces/debbie-hamilton/): My HCM journey began on January 4, 2014 but my diagnosis of HCM took 2 more years. I was getting ready to head to work, and I felt my heart start racing. I was still feeling ok, just annoyed at this point, so I headed to work. - [Dawn Levitt](https://4hcm.org/faces/dawn-levitt/): Dawn Levitt grew up without any knowledge of heart disease in her family. Several relatives of both of her parents passed away in early middle age, but no one made a connection linking their deaths. Her family harbored a distrust of doctors and rarely sought medical care for themselves, but Dawn ended up at the doctor’s office or Emergency Room often due to severe asthma which left her winded and dizzy after physical exertion. - [David Diegel](https://4hcm.org/faces/david-diegel/): I knew for many years that some form of cardiovascular disease ran in my family since my dad died at 60 shortly after my college graduation, and his father (my grandpa) died at 49 when dad was a teen. The severity of the disease was thrown into sharp contrast when one of my older brothers died at 51 in 2017. An autopsy indicated he had Hypertrophic Cardiomyopathy (HCM). - [Collin Dolder](https://4hcm.org/faces/collin-dolder/): As a young child, Collin was involved in many sports activities. When he was 13, Collin began complaining of chest pains during physical exertion. - [Cole Mitchell](https://4hcm.org/faces/cole-mitchell/): My name is Cole and I am 25 years old from rural Pennsylvania. I grew up with a single mother as my father passed away before I was born due to complications from a kidney transplant after a heart transplant. My mother was my rock growing up and she still is. So when I was diagnosed at age 12, it was her support that made it easier. - [Claude Brady](https://4hcm.org/faces/claude-brady/): Claude P. Brady (Age 84) A long-time resident of Arlington, VA passed away peacefully on January 25, 2022.Claude exceeded all expectations by living a full and wonderful life 32 years after his heart transplant in 1989. - [Christine Callans](https://4hcm.org/faces/christine-callans/): My HCM story started when I was 24. I had just given birth to my son, and the doctors had discovered he had a heart murmur. After my husband and I were screened, they found out I had Hypertrophic Cardiomyopathy (HCM), and I had passed it on to my son. I was shocked, and I felt guilty for giving it to him. - [Caroline Rosenstone](https://4hcm.org/faces/caroline-rosenstone/): It is with sadness that we announce that Caroline Rosenstone, an HCMA Lifetime Member and friend to many in the HCM community, passed away on June 8, 2023. - [Caleb Leblanc](https://4hcm.org/faces/caleb-leblanc/): A MOTHER’S CAUTIONARY TALE – HCM MUST BE TAKEN SERIOUSLYKatie’s family has a history of heart problems and there is even a name for it - hypertrophic cardiomyopathy (HCM). Katie’s uncle passed away of HCM when she was about 3-4 years old. After his passing, other family members were diagnosed with HCM. Genetic testing was done on some family members based on the family history, and a disease-causing mutation was found in the TNNI gene. While some family members were being treated for HCM, it seemed under control, and Katie felt secure. - [Brian Blakely](https://4hcm.org/faces/brian-blakely/): Brian Blakely is a 39-year-old man from Salisbury, Maryland. He was diagnosed with HCM at the age of 21, just as he was finishing up college. - [Bill Rossi](https://4hcm.org/faces/bill-rossi/): Bill had always been involved in competitive sports, including weightlifting and participating in numerous 5k and 10k runs. When Bill began experiencing shortness of breath after mild physical activity, he decided to see a cardiologist. - [Ashley Fisher](https://4hcm.org/faces/ashley-fisher/): Ashley is a mother of two, wife and attorney who lives in Baltimore, Maryland. As a child, she was fairly active, and her family was not aware that HCM was part of their history. As she entered her late teens, she tried to stay active but noticed that she became short of breath and felt tightness in her chest even when she ran a small distance at a slow pace. She mistook this for being out of shape and not exercising frequently enough. Walks across her college campus left her red-faced and winded and no amount of "conditioning" improved her exercise tolerance. - [Anthony Hernandez](https://4hcm.org/faces/anthony-hernandez/): Like many others, Abbigayle and Anthony were a “Covid Couple” falling in love and starting a family in the middle of an international pandemic. They dreamed of a long life together and never thought their time would be so limited. his is an unusual HCM warrior story as the timeline is very compact and tragic. - [Anthony DiPrinzio](https://4hcm.org/faces/anthony-diprinzio/): “Anthony’s Heart” - Told by his mother, Angela DiPrinzio - [Anna Jeffries](https://4hcm.org/faces/anna-jeffries/): My HCM Journey technically started at birth. As a baby, I was pretty fussy, didn’t like people to hold me, and slept irregularly. My mom kept telling my pediatrician something was wrong. - [Amy Lenhart](https://4hcm.org/faces/amy-lenhart/): I could have been diagnosed with HCM at age 35, but they missed it - my allergist heard an unusual sound in my heart and referred me to a cardiologist who saw some thickening but didn’t do anything with this information. I went to another doctor, and they missed it again. The official diagnosis was when I was 41. This new doctor was kind of shocked that they hadn’t told me about it before. - [Adam Wodon](https://4hcm.org/faces/adam-wodon/): Adam Wodon was aware of heart disease in his family but had always attributed it to their lifestyle choices (smoking, diet, alcohol, etc.). - [Abbey Cannon](https://4hcm.org/faces/abbey-cannon/): Hi, my name is Abbey Cannon and here is a glimpse into my heart journey. ## People - [Jennifer Riekes](https://4hcm.org/people/jennifer-riekes/) - [Michael Wagenaar](https://4hcm.org/people/michael-wagenaar/) - [Richard Melia, PhD](https://4hcm.org/people/richard-melia-phd/) - [Stephen Winters, MD](https://4hcm.org/people/stephen-winters-md/) - [John Shanley](https://4hcm.org/people/john-shanley/) - [Bill Rossi](https://4hcm.org/people/bill-rossi/) - [Isaac R. Rodriguez-Chavez, PhD, MS, MHS](https://4hcm.org/people/isaac-r-rodriguez-chavez-phd-ms-mhs/) - [Kevin J. O’Connor, Esq](https://4hcm.org/people/kevin-j-oconnor-esq/) - [Michael Lynch](https://4hcm.org/people/michael-lynch/) - [Amit Kalia, MD](https://4hcm.org/people/amit-kalia-md/) - [Billur Dowse](https://4hcm.org/people/billur-dowse/) - [Amadou Diarra, PhD](https://4hcm.org/people/amadou-diarra-phd/) - [Jan Berger, MD, MJ](https://4hcm.org/people/jan-berger-md-mj/) - [Martin Maron](https://4hcm.org/people/martin-maron/) - [Rosemary Conlon](https://4hcm.org/people/rosemary-conlon/) - [Robert B. Lorfink](https://4hcm.org/people/robert-b-lorfink/) - [Adam Salberg](https://4hcm.org/people/adam-salberg/) - [Gordon A. Fox, PhD](https://4hcm.org/people/gordon-a-fox-phd/) - [Tyler Hontz](https://4hcm.org/people/tyler-hontz/): Public Health Fellow - [Stacey Titus-Brown](https://4hcm.org/people/stacey-titus/): Director of COE Development & Management - [Sara Amaya-Revelo](https://4hcm.org/people/sara-amaya-revelo/): Administrative Assistant & Health Equity Lead - [Sabrina Cuddy](https://4hcm.org/people/sabrina-cuddy/): Intake Coordinator - [Ross Hadley](https://4hcm.org/people/ross-hadley/): Systems Project Manager - [Pamela Posnock](https://4hcm.org/people/pamela-posnock/): Community Project Manager - [Noreen Dolan](https://4hcm.org/people/noreen-dolan/): Navigation Coordinator - [Michele Packard-Milam](https://4hcm.org/people/michele-packard-milam/): HCMA International (HCMAi) Development - [Lisa Salberg](https://4hcm.org/people/lisa-salberg/): CEO & Founder, Board of Directors Vice Chair - [Linda Montgomery](https://4hcm.org/people/linda-montgomery/): Director of Client Services - [Julie Russo](https://4hcm.org/people/julie-russo/): Director of Legislative & Volunteer Programs - [Julie Olsen](https://4hcm.org/people/julie-olsen/): Events Coordinator & Fundraising - [Elena Morgan](https://4hcm.org/people/elena-morgan/): Chief Operations Officer (COO) - [Demi Jorge](https://4hcm.org/people/demi-jorge/): Graphics Designer & Social Media Specialist - [Deborah McCall](https://4hcm.org/people/deborah-mccall/): Nurse Navigator - [Carolyn Willis](https://4hcm.org/people/carolyn-willis/): Membership Coordinator/Office Manager - [Arti Patel](https://4hcm.org/people/arti-patel/): Intake Coordinator - [Anna Rodonski](https://4hcm.org/people/anna-rodonski/): Nurse Navigator - [Amy Blair](https://4hcm.org/people/amy-blair/): Client Navigator - [Nikki Karri](https://4hcm.org/people/nikki-karri/): Public Health Fellow - [Hannah Wolf](https://4hcm.org/people/hannah-wolf/): Client Navigator - [Juliana Crem](https://4hcm.org/people/crem-juliana/): HCMA International (HCMAi) Development - [Claudine D’Angelo-Dotzman, MBA, MFA](https://4hcm.org/people/claudine-dangelo-dotzman/): Communications Manager - [Chris Williams](https://4hcm.org/people/christina-williams/): Client Navigator - [Adam Fathalla](https://4hcm.org/people/adam-fathalla/): Public Health Fellow ## Medical Details - [Shortness of Breath](https://4hcm.org/learn/shortness-of-breath/): Shortness of breath (dyspnea), is a feeling that one cannot breathe adequately. - [Palpitations](https://4hcm.org/learn/palpitations/): Palpitation is the feeling that your heartbeat is unusually strong, fast, or irregular. - [No Symptoms](https://4hcm.org/learn/no-symptoms/): Many people with hypertrophic cardiomyopathy do not know they have it because the disease may not cause symptoms. - [Muscle Pains](https://4hcm.org/learn/muscle-pains/): Muscle pain, also called myalgia, is a common symptom of Fabry disease, one of the spectrum of HCM-like disorders. - [Light-Headedness](https://4hcm.org/learn/light-headedness/): Light-headedness is a feeling as though you might faint. - [Fatigue](https://4hcm.org/learn/fatigue/): Fatigue is a feeling of tiredness or lack of energy, even when sleeping enough. - [Fainting (Syncope) and Near-Syncope](https://4hcm.org/learn/fainting/): Fainting, also known as syncope, is the temporary and sudden loss of consciousness. - [Chest Pain/Pressure](https://4hcm.org/learn/chest-pain/): Chest pain or pressure, (angina) is caused by the lack of oxygen-rich blood getting to the heart muscle. - [Brain Fog](https://4hcm.org/learn/brain-fog/): Brain fog, sometimes referred to as fuzzy thinking, is a momentary lapse in mental acuity and alertness. - [Valve Replacement](https://4hcm.org/learn/valve-replacement/): Valve replacement is a surgical procedure that removes a faulty valve and replaces it with a mechanical or biological tissue valve. - [Valve Repair](https://4hcm.org/learn/valve-repair/): Mitral valve repair is a surgical procedure that repairs a faulty mitral valve. - [Transplant](https://4hcm.org/learn/transplant/): A heart transplant is a surgical procedure involving removal of a diseased heart and replacement with a healthy human heart from a donor. - [Pulmonary Vein Ablation](https://4hcm.org/learn/pulmonary-vein-ablation/): Pulmonary vein isolation is a type of cardiac ablation used to treat atrial fibrillation. - [Myectomy](https://4hcm.org/learn/myectomy/): Myectomy is a surgical procedure used to treat obstruction in HCM, by reducing the thickness of the heart muscle. - [MAZE](https://4hcm.org/learn/maze/): Maze is a surgical procedure to treat atrial fibrillation. - [Catheter Ablation for Arrhythmias](https://4hcm.org/learn/catheter-ablation-for-arrhythmias/): Ablations for arrhythmias involve sending a catheter into the heart, and scarring heart tissue to block the electrical signals causing the arrhythmia. - [Bypass/CABG](https://4hcm.org/learn/bypass-cabg/): Coronary artery bypass graft surgery (CABG) is used to treat coronary artery disease. - [Alcohol Septal Ablation](https://4hcm.org/learn/alcohol-septal-ablation/): Alcohol septal ablations are a minimally invasive procedure used to treat obstruction in HCM. - [Sodium Channel Blockers](https://4hcm.org/learn/sodium-channel-blockers/): Sodium channel blockers inhibit the movement of sodium into cells. In HCM, they have several different uses.Sodium channel blockers were mainly developed as antiarrhythmics. Some were developed as local anesthetics. Two of these drugs play an important role in treating HCM patients. - [Myosin Inhibitors](https://4hcm.org/learn/myosin-inhibitors/): Myosin inhibitors are drugs that make the heart beat with less force. - [Diuretics](https://4hcm.org/learn/diuretics/): Diuretics ("water pills") are used to help the kidneys get rid of unneeded water and salt. - [Calcium Channel Blockers](https://4hcm.org/learn/calcium-channel-blockers/): Calcium channel blockers (CCBs) are used extensively in HCM patients to lower blood pressure, and sometimes to slow the heart rate as well. - [Blood Thinners](https://4hcm.org/learn/blood-thinners/): Blood thinners (anticoagulants) make it harder for blood to clot. They are used in HCM mainly to reduce the danger of stroke among those with atrial fibrillation, atrial flutter, or artificial valves. - [Beta Blockers](https://4hcm.org/learn/beta-blockers/): Beta blockers are drugs that make your heart beat slower and with less force. - [Antibiotics](https://4hcm.org/learn/antibiotics/): Antibiotics are antimicrobial medications, used against infections. - [Antiarrhythmics](https://4hcm.org/learn/antiarrhythmics/): Antiarrhythmic drugs are used to try to restore normal rhythm in the heart. - [Transesophageal Echocardiogram (TEE)](https://4hcm.org/learn/transesophageal-echocardiogram-tee/): A transesophageal echocardiogram is a test that creates images of the heart. It is similar to a standard echocardiogram, but TEEs are done through the esophagus. - [Tilt Table](https://4hcm.org/learn/tilt-table/): A tilt table is used to find the cause(s) of unexplained fainting. - [Thallium (Nuclear) Stress Test](https://4hcm.org/learn/thallium-nuclear-stress-test/): A thallium stress test is used to show blood flow to your heart while exercising and while at rest. - [Stress Test](https://4hcm.org/learn/stress-test/): A stress test is a diagnostic test used to see how the heart functions while exercising. - [Stress Echo](https://4hcm.org/learn/stress-echo/): A stress echocardiogram is done immediately after exercising to see how the heart functions. - [PET Scan](https://4hcm.org/learn/pet-scan/): A positron emission tomography (PET) scan shows how your tissues and organs are functioning. - [MRI](https://4hcm.org/learn/mri/): Magnetic resonance imaging (MRI) creates images of organs and tissues in your body using magnetic fields and radiofrequency waves. - [Implantable Loop Recorder](https://4hcm.org/learn/implantable-loop-recorder/): An implantable loop recorder records the electrical activity of the heart. - [Holter Monitor](https://4hcm.org/learn/holter-monitor/): A Holter monitor is a wearable device that records the heart's electrical signals. - [Genetic Testing](https://4hcm.org/learn/genetic-testing-an-overview/): In genetic testing, a blood or saliva sample is collected to test whether the person has genetic mutations known to be linked to HCM. - [Event Monitor](https://4hcm.org/learn/event-monitor/): An event monitor is a portable device that is used to record the electrical activity of your heart. - [EP Testing](https://4hcm.org/learn/ep-testing/): Electrophysiology testing, is used to understand and detect the electrical activity of your heart. - [EKG](https://4hcm.org/learn/ekg/): An electrocardiogram, or ECG/EKG, measures the heart's electrical activity. - [Echocardiogram](https://4hcm.org/learn/echocardiogram/): An echocardiogram is a test that uses sound waves to make images of your heart. - [CPET](https://4hcm.org/learn/cpet/): During a cardiopulmonary stress test your doctor will measure how well your heart and lungs are working during exercise. - [Cardiac Catheterization](https://4hcm.org/learn/cardiac-catheterization/): During a cardiac catheterization, your doctor will insert a tube into a blood vessel, and thread it through your body into a heart chamber. It is used to directly measure heart function and to perform certain treatments. - [Cardiac Biopsy](https://4hcm.org/learn/cardiac-biopsy/): In a myocardial biopsy, doctors remove a small piece of heart tissue and examine it. It is usually done after transplants to see how your body is reacting to your new heart. - [Transvenous Implantable Cardioverter Defibrillator (ICD) Traditional](https://4hcm.org/learn/transvenous-implantable-cardioverter-defibrillator-icd-traditional/): A transvenous (through a vein), or traditional, implantable cardioverter defibrillator (ICD) is a device implanted in your chest. It provides shocks to stop, or in some cases prevent, certain dangerous arrhythmias. - [Subcutaneous Implantable Cardioverter Defibrillator (ICD)](https://4hcm.org/learn/subcutaneous-implantable-cardioverter-defibrillator-icd/): A subcutaneous ICD (S-ICD) is a type of ICD that is implanted under the skin below the armpit, and can provide shocks to stop, or in some cases prevent, certain dangerous arrhythmias. - [Pacemaker](https://4hcm.org/learn/pacemaker/): A pacemaker is a device that uses electrical pulses to help control certain abnormal rhythms. - [Lead Extraction](https://4hcm.org/learn/lead-extraction/): Lead extraction is a procedure used to remove one or more leads from inside of the heart. - [Device Replacement](https://4hcm.org/learn/device-replacement/): Device replacement is a surgical procedure to remove and replace an ICD or pacemaker. ## Events - [In Person AdventHealth Orlando – Heart & Harmony: Living Well with HCM](https://secure.4hcm.org/nx/portal/event-detail?event=5403) - [Tales from the Heart with Lisa and Guest Colby Salerno, DO](https://secure.4hcm.org/nx/portal/event-detail?event=5398) - [BREAKING NEWS – FDA Approves CAMZYOS® (mavacamten) for Children over 30kg with Obstructive Hypertrop](https://secure.4hcm.org/nx/portal/event-detail?event=5392) - [Allen AME Heart Health](https://secure.4hcm.org/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F48153) - [All Things Myectomy with Host Greg LeValley – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5380) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5375) - [Transplant Pathway Discussion Group – Host Karen Klimczak and Debbie Hamilton](https://secure.4hcm.org/nx/portal/event-detail?event=5370) - [Life with HCM Discussion Group – Host Debra Rafson – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5365) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5360) - [ICD Discussion Group with Hosts Sydelle Zinn and Karen Newstrom – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5355) - [“Talk it Out” Online Discussion Group with Host Gwen Mayes](https://secure.4hcm.org/nx/portal/event-detail?event=5350) - [Pre-Myectomy Education Session for Individuals SCHEDULED for Surgery with Host Sabrina Cuddy](https://secure.4hcm.org/nx/portal/event-detail?event=5345) - [HCM Symptoms Discussion Group with Host Trudy Tynan – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5340) - [“The Pulse” An HCMA Men’s Discussion Group for the Guy Under 40](https://secure.4hcm.org/nx/portal/event-detail?event=5335) - [The Stanford Center for Inherited Cardiovascular Disease peer-facilitated virtual support group](https://secure.4hcm.org/nx/portal/event-detail?event=5330) - [Pre-Transplant Online Discussion Group with Hosts Lisa Vecchione and Dawn Levitt](https://secure.4hcm.org/nx/portal/event-detail?event=5320) - [Discussion Group for Parents/Caregivers of Children 26 and Under with Danielle & Erin](https://secure.4hcm.org/nx/portal/event-detail?event=5315) - [Genetics Discussion Group with Lynda Neuhausen and Vi Tang](https://secure.4hcm.org/nx/portal/event-detail?event=5310) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5305) - [All Things Myectomy with Host Greg LeValley – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5300) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5295) - [HCM Masterclass Pediatrics – Overlapping HCM Phenotypes](https://secure.4hcm.org/nx/portal/event-detail?event=5391) - [Life with HCM Discussion Group – Host Debra Rafson – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5290) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5285) - [ICD Discussion Group with Hosts Sydelle Zinn and Karen Newstrom – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5280) - [“Talk it Out” Online Discussion Group with Host Gwen Mayes](https://secure.4hcm.org/nx/portal/event-detail?event=5275) - [Transplant Pathway Discussion Group – Host Karen Klimczak and Debbie Hamilton](https://secure.4hcm.org/nx/portal/event-detail?event=5270) - [HCMA’s Bighearted Warriors Unite Tour – JHM HCM Patient Symposium 2026](https://secure.4hcm.org/nx/portal/event-detail?event=4449) - [HCM Symptoms Discussion Group with Host Trudy Tynan – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5265) - [“The Pulse” An HCMA Men’s Discussion Group for the Guy Under 40](https://secure.4hcm.org/nx/portal/event-detail?event=5260) - [Pre-Myectomy Education Session for Individuals SCHEDULED for Surgery with Host Paul Perlman](https://secure.4hcm.org/nx/portal/event-detail?event=5255) - [Discussion Group for Parents/Caregivers of Children 26 and Under with Danielle & Erin](https://secure.4hcm.org/nx/portal/event-detail?event=5250) - [Genetics Discussion Group with Lynda Neuhausen and Vi Tang](https://secure.4hcm.org/nx/portal/event-detail?event=5245) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5240) - [The Stanford Center for Inherited Cardiovascular Disease peer-facilitated virtual support group](https://secure.4hcm.org/nx/portal/event-detail?event=5325) - [Pre-Transplant Online Discussion Group with Hosts Lisa Vecchione and Dawn Levitt](https://secure.4hcm.org/nx/portal/event-detail?event=5230) - [Virginia Mason Franciscan Health HCM Center of Excellence monthly peer- facilitated virtual](https://secure.4hcm.org/nx/portal/event-detail?event=5225) - [Saturday Night with the HCMA 2026](https://secure.4hcm.org/nx/portal/event-detail?event=4934) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5220) - [ICD Discussion Group with Hosts Sydelle Zinn and Karen Newstrom – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5215) - [All Things Myectomy with Host Greg LeValley – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5210) - [Transplant Pathway Discussion Group – Host Karen Klimczak and Debbie Hamilton](https://secure.4hcm.org/nx/portal/event-detail?event=5205) - [Pre-Myectomy Education Session for Individuals SCHEDULED for Surgery with Host Sabrina Cuddy](https://secure.4hcm.org/nx/portal/event-detail?event=5180) - [Life with HCM Discussion Group – Host Debra Rafson – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5200) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5195) - [“The Pulse” An HCMA Men’s Discussion Group for the Guy Under 40](https://secure.4hcm.org/nx/portal/event-detail?event=5185) - [“Talk it Out” Online Discussion Group with Host Gwen Mayes](https://secure.4hcm.org/nx/portal/event-detail?event=5190) - [HCMA Bighearted 5K 2026](https://secure.4hcm.org/nx/portal/event-detail?event=5131) - [2026 HCMA Patient Meeting](https://secure.4hcm.org/nx/portal/event-detail?event=4455) - [CME/CE: Hearts and Minds: Training in Cardiac Psychology for Mental Health Professionals](https://secure.4hcm.org/nx/portal/event-detail?event=5121) - [HCM Symptoms Discussion Group with Host Trudy Tynan – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5175) - [Genetics Discussion Group with Lynda Neuhausen and Vi Tang](https://secure.4hcm.org/nx/portal/event-detail?event=5170) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5165) - [The Stanford Center for Inherited Cardiovascular Disease peer-facilitated virtual support gr](https://secure.4hcm.org/nx/portal/event-detail?event=5160) - [Pre-Transplant Online Discussion Group with Hosts Lisa Vecchione and Dawn Levitt](https://secure.4hcm.org/nx/portal/event-detail?event=5155) - [Welcome to newest HCMA Recognized Center of Excellence: Robert Wood Johnson University Hospital!](https://secure.4hcm.org/nx/portal/event-detail?event=5386) - [Discussion Group for Parents/Caregivers of Children 26 and Under with Danielle & Erin](https://secure.4hcm.org/nx/portal/event-detail?event=5150) - [Transplant Pathway Discussion Group – Host Karen Klimczak & Debbie Hamilton](https://secure.4hcm.org/nx/portal/event-detail?event=5075) - [September Allen AME Heart Health](https://secure.4hcm.org/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F52700) - [HCM Masterclass Pediatrics – HCM in Adolescents and Young Adults (HCM vs. HOCM)](https://secure.4hcm.org/nx/portal/event-detail?event=5126) - [Virginia Mason Franciscan Health HCM Center of Excellence monthly peer- facilitated virtual](https://secure.4hcm.org/nx/portal/event-detail?event=5095) - [Newly Diagnosed Online Education Group – Host Linda Montgomery](https://secure.4hcm.org/nx/portal/event-detail?event=5090) - [ICD Discussion Group with Hosts Sydelle Zinn and Karen Newstrom – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5085) - [Tales from the Heart with Lisa and guest Dr. Alex de Feria](https://secure.4hcm.org/nx/portal/event-detail?event=5116) - [All Things Myectomy with Host Greg LeValley – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5080) - [“Talk it Out” Online Discussion Group with Host Gwen Mayes](https://secure.4hcm.org/nx/portal/event-detail?event=5060) - [ATL NAACP/AHC Heart Health Summit Sept.19 9am-2:15pm](https://secure.4hcm.org/nx/portal/neonevents/events?path=%2Fportal%2Fevents%2F52462) - [All Hearts Collaborative Volunteers Needed for Atlanta Heart Health Summit](https://secure.4hcm.org/nx/portal/event-detail?event=5102) - [Tales from the Heart with Lisa with HCMA Ambassadors, Debra Rafson & Joey Graham](https://secure.4hcm.org/nx/portal/event-detail?event=5145) - [Life with HCM Discussion Group – Host Debra Rafson – Free Online Discussion Group](https://secure.4hcm.org/nx/portal/event-detail?event=5070) - [George Dooley Classic – 27th Annual Golf Outing](https://secure.4hcm.org/nx/portal/event-detail?event=5110) - [Tales from the Heart with Lisa and guest Dr. Martin Maron](https://secure.4hcm.org/nx/portal/event-detail?event=5115)