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

The Christ Hospital Health Network HCM Program – Cincinnati, OH

By Olivia Esposito

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. Where: The Summit Hotel – 5345 Medpace Way, Cincinnati, OH 45227 When:  Saturday, May 4, 2024  Time:     9 am – 4 pm  Cost:      Admission for 1 – $25.00              …

Volunteer!

By Julie Russo

Share Your Story (SYS) Volunteer!  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…

April’s Topic is Genetic Testing

By Sabrina Cuddy

Who should have genetic testing, why, and when? 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. Why does it matter?   Some hearts look like…

Volunteer!

By Julie Russo

Share Your Story (SYS) Volunteer!  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,…

Vanderbilt Heart and Vascular Institute– Nashville, TN

By Stacey Titus

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…

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…

Arrhythmia is the HCMA topic for March

By Sabrina Cuddy

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! Some common arrhythmias in HCM are atrial flutter/fibrillation, ventricular tachycardia/fibrillation,…

Yale New Haven Hospital Heart and Vascular Center – New Haven, CT

By Olivia Esposito

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. Yale New Haven’s well-established HCM center provides specialized, expert physicians and staff specially trained to manage…

Volunteer!

By Julie Russo

Share Your Story (SYS) 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! To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. HCMA Theme of the Month Stories The…

February is Heart Month

By Sabrina Cuddy

Here are some HCM basics that everyone should know: Some HCM statistics 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/  70% of those…

News - HCMA and HCM related news

1News

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.…

Student Athlete Screenings – COVID

By Lisa

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

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.

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…