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
Medtronic ICD Recall
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
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…
HCMA’s August 2023 Featured Discussion Group Leader: Linda Montgomery
Linda hosts our “Newly Diagnosed” education groups. These free online education sessions are ideal for those newly diagnosed (within the past two years) or those new to the HCMA. Linda offers several dates & times each month to make it convenient for all to attend. About Linda: I am one of seven children, which has taught…
Volunteer!
Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. The tireless dedication of our volunteers gives us the extra hand needed to make our community’s healthcare experiences positive. To learn more about HCMA volunteer…
Are you newly diagnosed with HCM, or have your symptoms recently changed?
It may feel overwhelming to learn about this new diagnosis or figure out how to “adjust the sails” to manage your HCM if things are changing. The HCMA is here for you – you are not alone! Besides the information in this newsletter and on our website, you can contact us for an Intake and…
Volunteer!
Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy Association and our commitment to providing support, education, advocacy, and advancement of research, understanding, and care to those with HCM. The tireless dedication of our volunteers gives us the extra hand needed to make our community’s healthcare experiences positive. To learn more about HCMA volunteer opportunities…
July is about COE Care at the HCMA
What is a Center of Excellence (COE)? A Center of Excellence is a team of specialists who come together to provide high-quality care to patients with a specific disease using accepted best practices. It is common for medical facilities to seek COE status if they have a team working with a particular disease, such as…
Free Flights for Medical Appointments
We recently met with a wonderful organization that supplies flights to those in need. It is a non-profit organization that can get you to an HCMA Recognized Center of Excellence. The organization is called Angel Flights East. They are mainly in the North East but can fly up to 1,000 miles. Should your trip be…
HCMA Welcomes our newest Center of Excellence
Allegheny Health Network HCM program is the HCMA’s newest Recognized Center of Excellence. AHN is a multi-disciplinary team of cardiovascular specialists trained in diagnosing and treating hypertrophic cardiomyopathy. The AHN team will provide patients with a comprehensive assessment and conduct a diagnostic test to determine the most appropriate therapy. Team members collaborate to provide patients…
Patient Education Committee Update
The Patient Education Committee has been busy in recent months! Some of the projects we’re working on or planning include: Caregiver education: We will develop guides to help family members, and friends know when patients need help and what steps (emergency room, call the doctor, additional medications) to take if they do. Decision making: There…
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…
HCMA BigHearted Blog RSS Feed
- The HCMA theme for December is Gratitude
- Holiday Weight Management
- It’s Emotional Wellness October!
- Septal Reduction September
- New Sponsor- Viz.ai
- How patients and families can help build an understanding of HCM care, awareness, and advocacy
- HCMA Lori Fund
- Are you newly diagnosed with HCM, or have your symptoms recently changed?
- July is about COE Care at the HCMA!
- HCMA West Coast Tour
