The Big Hearted Echos Blog provides content in the following areas: News, science reviews, HCMA news, and perspectives.

From the desk of the Hcma ceo:

Salberg

Dear Lori

By Lisa
Posted in

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.

By Lisa
Posted in

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

By Lisa
Posted in

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

By Lisa
Posted in

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

By Lisa
Posted in

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

By Lisa
Posted in

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

By Lisa
Posted in

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

By Lisa
Posted in

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.

Lori

The day that changed my life: June 12, 1995

By Lisa
Posted in

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, age 12

Lisa, we have your heart. How soon can you be here?

By Lisa
Posted in

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

blog roll

Training and Experience Count: Myectomy is Safest at High-Volume Centers

By Gordon Fox

Myectomy is safest at high-volume centers.

Cardiac implantable device infections

By admin

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

By admin

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.…

National Mental Health Month

By ross

In recognition of Mental Health Month, the HCMA is working to raise awareness of trauma and the impact it can have on the physical, emotional, and mental well-being of children, families, and communities. Mental health is important at every stage of life, from childhood and adolescence through older adulthood. SAMHSA’s National Helpline, 1-800-662-HELP (4357) (also known as…

Updated thinking on HCM genetics

By Gordon Fox

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.

Myosin and actin

Mavacamten instead of septal reduction?

By Gordon Fox

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

By Gordon Fox

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

By Sabrina Cuddy

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

By Gordon Fox

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

By ross

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…

News - HCMA and HCM related news

1News

HCMAs first Hill Day

By Linda Montgomery

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

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

By Olivia Esposito

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)

By ross

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…

Septal myectomy and alcohol septal ablation: how safe and effective?

By Gordon Fox

Background 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. Methods Yujiro Yokoyama and colleagues conducted a meta-analysis of studies that compared…

Reasonable Accommodations

By Olivia Esposito

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.  You can check out the new…

George Dooley Memorial

By admin

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. George died at the young age of 41 from Hypertrophic Cardiomyopathy (HCM), leaving behind a wife, 2 small children, and family…

Medtronic ICD Recall

By Olivia Esposito

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. Who does it affect: This recall affects only the following Medtronic ICDs: Cobalt™ XT/Cobalt™/Crome™ ICDs and CRT-Ds, a subset of: Claria MRI™/Amplia MRI™/Compia MRI™/Viva™/Brava™ CRT-Ds, a subset of: Visia AF™/Visia AF MRI™/Evera™/Evera MRI™/Primo MRI™/Mirro MRI™…

Phillips AED Pad Recall

By Olivia Esposito

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. Which AED pads does it affect: This recall affects only the Philips Adult SMART Pads Cartridge [REF: M5071A] and the Infant/Child SMART…

Lifestyle and Exercise in Hypertrophic Cardiomyopathy (LIVE-HCM) Results Released

By admin

Vigorous Exercise in Patients With Hypertrophic Cardiomyopathy – JAMA Cardiology | Original Investigation Exercise has well-established physical and mental health benefits and is an integral part of life for millions of people worldwide. However, for individuals with hypertrophic cardiomyopathy (HCM), the possibility that physical activity may heighten the risk of sudden cardiac death (SCD) has…