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
Updated thinking on HCM genetics
Since around 1990, HCM has been regarded as a disease caused entirely by single mutations in genes affecting a protein in the cardiac sarcomeres. There is no doubt that sarcomere mutations play an important role. But in the last several years, there has been a growing realization among researchers that this cannot be the entire explanation for the causes of HCM. This is because a majority of HCM patients do not appear to carry these mutations, and many people who do carry them never develop HCM. The development and inheritance of HCM are more complicated than was previously thought. However, for patients, many of the lessons previously taught about HCM genetics remain true. Current research may open the way to a much-improved understanding of HCM.
Mavacamten instead of septal reduction?
On April 2, Dr. Milind Y. Desai, a leading HCM researcher and practitioner, will present initial results on mavacamten’s use in severely obstructed HCM patients.
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.
Fitness in HCM
Did you resolve to get more active this year? There is a lot of confusion about exercise for HCM patients. Some doctors advise “don’t do anything physical,” while others say, “do whatever you want.” But we can likely agree on one thing – they are both wrong, and the best advice is somewhere in the…
Thanksgiving and gratitude
It’s Thanksgiving in the U.S. But we’re not going to list things we should be thankful for, or rehash the history of the holiday. Instead, let’s think about gratitude, a response to some benefit given to you by someone (or something) else. Mental attitudes have been shown to affect our health. And this seems to…
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…
Weight loss improves HCM patients’ heart health
Weight management is a challenge for many. Losing weight is a challenge for nearly everyone who tries it. It can be more difficult for many HCM patients because we often take drugs that slow us down. It’s also hard to study: researchers can assign different groups to different diets, but how can they tell who…
Consequences of obesity for health in HCM patients
Weight management can make a big difference for HCM patients. That’s not just something cardiologists say to lecture you. A 2020 paper, Association of Obesity With Adverse Long-term Outcomes in Hypertrophic Cardiomyopathy, provides some insight. This study by a group of leading HCM researchers from three countries examines the health consequences of body weight in…
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News - HCMA and HCM related news
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…
How patients and families can help build an understanding of HCM care, awareness, and advocacy
Clinical Trials: 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. So, what is a Clinical Trial? A Clinical trial is a research study that tests a medicine, surgical, or behavioral treatment to see if it works. …
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…
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…
HCMAs first Hill Day
Hill Day, February 15th, 2024 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…
Beware of “Alternative” Funding Programs When Choosing your Health Plan
By: Lisa Salberg, Founder and CEO Hypertrophic Cardiomyopathy Association A new health insurance workaround could endanger the health of patients, particularly those with chronic illnesses like hypertrophic cardiomyopathy. This “new” concept is done in an attempt to cut costs for employers. This scheme is dubbed as the “alternative funding program.” In the context of hypertrophic…
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 <35 years diagnosed with a cardiovascular condition or borderline finding with potential increased risk of major adverse cardiovascular events. Athletes must…
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…
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- How patients and families can help build an understanding of HCM care, awareness, and advocacy
- HCMA Lori Fund
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