From the desk of the Hcma ceo:
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…
In Her Own Words: Lisa Salberg advocates with a heart.
My WHY – and OUR fight. Between 1 in 250 to 1 in 500 people are impacted by Hypertrophic Cardiomyopathy, a genetic heart condition that took the life of Lisa Salberg’s sister. Lisa, her daughter and many other family members live with this condition. That’s why she’s dedicated her life to advocacy. “Heart disease has…
HCMA/Nest Portal – HCMA Founder introduces you to a new way to get educated and stay engaged
We were excited to announce on HCM Awareness Day 2023 our new partnership with Nest Genomics, a provider of services that helps educate patients to achieve the best outcomes in care and shared decision-making. As the HCMA grows, we must find new ways to provide personal attention and scale up to the larger community we…
A Man Called Otto
A true MUST-see for the HCM Community. Today I should be calling my sister and signing… “when I’m 64”, but instead, I will remember the beautiful soul we lost when she was only 36. Yesterday I went to see the new movie “A Man called Otto”, in this movie, Tom Hanks character Otto has HCM.…
Responding to Sudden Cardiac Arrest: The Damar Hamlin teachable moment
Commotio Cordis appears to have occurred at the Bill’s game, Monday, January 2, 2023, with the collapse of Damar Hamlin. If you don’t know what this is… sudden cardiac arrest occurs after a chest blow. While uncommon, it speaks to the need for AEDs on all playing fields. The HCMA shares in the hopes for…
The Audacity of Grief
Can we talk about grief for a moment? We all experience loss, and each loss impacts us differently. There is no rule book for processing grief, and that’s a beautiful thing – processing grief is unique to the individual it happens to. Grief is defined as a specific type of suffering that is often tied…
The Mavacamten Marathon
Camzyos™ Approval This is an exciting time for the HCM Community. The FDA has approved Mavacamten under the brand name CAMZYOS, the first-in-class medication for symptomatic obstructive hypertrophic cardiomyopathy and the first drug developed specifically for HCM. Read the press release here CAMZYOS Patient Portal CAMZYOS Medication Guide CAMZYOS U.S. Prescribing Information CAMZYOSTM REMS (Risk Evaluation and Mitigation Strategy) Our…
Ever Wonder Who’s at the Center of Patient-Centered Care? Look Again
Of all the players in the healthcare system, patient advocacy organizations are often the most disadvantaged when a drug hits the market and they find themselves pitted against health providers, payers, pharmaceutical companies, and policymakers, all of whom want their piece of the financial pie.
The day that changed my life: June 12, 1995
The day that changed my life was June 12, 1995, a Monday. The phone rang at 5:50am, which is never a good thing. I managed to roll over with my 8-month pregnant belly and answer the phone on the second ring. The voice was familiar but panicked it was my mother. “She is not breathing…
Lisa, we have your heart. How soon can you be here?
So there I was holding my heart in my hands while a new heartbeat was in my chest. Talk about surreal moments! The path that led to this moment encompasses 36 of my 48 years on this earth and in this one moment, I came face to face with the very thing that I had hated, feared, and loved… my heart.
HCMA Blog Roll
July is about COE Care at the HCMA!
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…
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! La Jolla, CA, “Meet and Greet” on Thursday, July 18th, at Olive & Basil from 6:00 – 8:00 PM PT. Space is limited, so we ask all to register by July 16th for proper headcount and to ensure enough…
Volunteer!
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. FAQ: What is an HCMA Legislative State Champion? An amazing group of volunteers with A SHARED COMMITMENT TO FIND…
Volunteer!
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. FAQ: What is an HCMA Ambassador? What if every person with HCM had an accurate diagnosis, and access to…
The HCMA’s 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. Experts agree that exercise is healthy for people with HCM.…
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…
HCMA’s 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…
In-Person Bighearted Warriors Unite featuring The Christ Hospital & Cincinnati Children’s
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…
Volunteer!
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…
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! HCM can cause various symptoms depending on how stiff the heart is, how much scarring (fibrosis) there is, and…
News - HCMA and HCM related news
Training and Experience Count: Myectomy is Safest at High-Volume Centers
Myectomy is safest at high-volume centers.
Cardiac implantable device infections
The HCMA participated in an American Heart Association summit of more than 40 health care professionals to bridge gaps in awareness, detection, and appropriate treatment of cardiac implantable electronic device (CIED) infections.
CYTOKINETICS AFICAMTEN RESEARCH
REDWOOD-HCM OLE REDWOOD-HCM OLE: First Long-Term Data from Open Label Extension Cytokinetics’ also announced positive data relating to aficamten from REDWOOD-HCM OLE (Randomized Evaluation of Dosing With CK-274 in Obstructive Outflow Disease in HCM Open Label Extension) and the results from two additional analyses of omecamtiv mecarbil from GALACTIC-HF (Global Approach to Lowering Adverse Cardiac Outcomes Through Improving Contractility in Heart Failure), all presented in Late-Breaking Science Sessions at Heart Failure 2022, an International Congress of the European Society of Cardiology.…
Student Athlete Screenings – COVID
We recently became aware of a policy of a New Jersey family medical practitioner (in your region) that has the ability to create significant misinformation, confusion, and financial hardship. New Jersey Statue C.18A:40-41.6 clearly communicates the role of student-athlete preparticipation physical examinations. The Hypertrophic Cardiomyopathy Association, HCMA, and other organizations in NJ worked to pass…
Two new state-of-the-art reviews on HCM
An expert panel of HCM doctors published two state-of-the-art reviews in the Feb. 1, 2022 issue of Journal of the American College of Cardiology. The reviews are aimed at doctors who treat patients with HCM. But they include much information of interest to patients.
ICER Publishes Final Evidence Report and Policy Recommendations on Mavacamten for Hypertrophic Cardiomyopathy
ICER has released its evidence report and recommendations. Here is a list of highlights: All stakeholders have a responsibility to facilitate meaningful patient access to multidisciplinary centers of excellence for HCM in ways that do not exacerbate disparities. The manufacturer of mavacamten should commit to sponsoring research that will address the lack of evidence on…
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HCMA BigHearted Blog RSS Feed
- July is about COE Care at the HCMA!
- HCMA West Coast Tour
- Volunteer!
- Volunteer!
- The HCMA’s Focus for June is Staying Fit With HCM!
- Swinging for a Cause: Golf Outings to Support HCMA
- HCMA’s Lifesaving Engagement in the Local Community
- In-Person Bighearted Warriors Unite featuring The Christ Hospital & Cincinnati Children’s
- Volunteer!
- Medical Management May
