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
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…
The University of Maryland – Baltimore, MD
The Hypertrophic Cardiomyopathy Program at the University of Maryland Heart & Vascular Center is Recognized as an HCMA Center of Excellence and the only HCMA-recognized center in the state of Maryland at this time. The University of Maryland’s team of cardiologists, cardiac surgeons, geneticists, electrophysiologists, nutritionists, and physical therapists are ready to treat you and…
Volunteer!
Volunteers greatly 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 ones. To learn more about HCMA volunteer…
LIVE-HCM: Lifestyle and Exercise
There is finally more clarity about exercise for HCM patients. Some doctors say, “Don’t do anything physical,” and others say, “Do whatever you want.” We can likely agree on one thing – they’re both wrong, and the best advice is somewhere in the middle. A recent study of the exercise habits of over 1500 HCM…
HCMA travels to policy conference
Last week, I had the privilege to moderate a panel, “Novel Nursing: Helping Patients Adapt to Medical Innovation,” on the challenges and opportunities created by Myosin Inhibitors in Hypertrophic Cardiomyopathy at the PACH Cardiovascular Health Policy Summit in Washington DC. I was joined by Sue Philpott, RN, BSN – Corewell Health in Grand Rapids, MI, and Amy Beatty…
News - HCMA and HCM related news
Reasonable Accommodations
Through collaboration with Reasonable Accommodations, 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 expanded…
George Dooley Memorial
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
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…
Lifestyle and Exercise in Hypertrophic Cardiomyopathy (LIVE-HCM) Results Released
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…
Problems with generic metoprolol
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.
HCM and Mental Health
Learning that you have a serious chronic disease can be stressful. Now a group of researchers in Korea provide evidence (Park et al. 2022) that mental health problems can be an important consequence of diagnosis with HCM. Methods The research team was led by Hyung-Kwan Kim of Seoul National University. These scientists compared the risk…
Mavacamten Affects Diastolic Dysfunction
Background HCM patients commonly suffer from diastolic dysfunction (also called heart failure with preserved ejection fraction (HFpEF), or left-sided heart failure): their hearts do not fill adequately. As a result, even after septal reduction therapy (SRT: myectomy or alcohol septal ablation), some patients are quite symptomatic. Can mavacamten (Camzyos) help relieve their symptoms? Now a…
Expert consensus on syncope in HCM
Syncope (fainting) is common among HCM patients, but its causes are frequently unknown. An expert panel has published guidelines for diagnosis and treatment of syncope in HCM.
Septal Myectomy Today
What’s the status of septal myectomy today? A recent review paper by an Expert Panel for the American Journal of Cardiology (Maron et al. 2022) concludes that “Surgical myectomy remains the time-honored primary treatment for hypertrophic cardiomyopathy patients with drug refractory limiting symptoms due to LV outflow obstruction.” One of the safest of heart procedures…
