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

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…

Volunteer!

By Julie Russo

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,…

Duke Hypertrophic Cardiomyopathy Center –  Durham, NC

By Stacey Titus

Duke Hypertrophic Cardiomyopathy Center –  Durham, NC The Duke Hypertrophic Cardiomyopathy Center has been an HCMA Center of Excellence since 2018 and is a part of the Duke Heart Center in Durham, North Carolina. “We have created a dedicated, multi-disciplinary team of physicians, nurses, advanced practice providers, and genetic counselor who are focused on providing personalized,…

Fall Conferences

By ross

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…

Gratitude

By Sabrina Cuddy

The HCMA theme for December is Gratitude Why practice 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…

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…

November’s theme: weight management

By Sabrina Cuddy

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…

Welcome The Christ Hospital Health Network HCM Program – Cincinnati, OH

By Stacey Titus

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,…

Welcome The Christ Hospital Health Network HCM Program – Cincinnati, OH

By Stacey Titus

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,…

News - HCMA and HCM related news

1News

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…

All generic drugs are not equal.

Problems with generic metoprolol

By Gordon Fox

Many HCM patients have issues with metoprolol, the beta-blocker most widely prescribed for HCM. There may be multiple reasons for this, but a key one has been known for some time: many generic formulations of metoprolol succinate have time-release mechanisms that do not work in a similar fashion to the brand-name Toprol XL.