Julie Russo • August 30, 2023
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 and get involved, contact  julie@4hcm.org  or click  here.

Share Your Story (SYS)

Our HCMA themes for September are “Septal Reduction Options” and “Managing Non-Obstructed HCM” featuring the story of  Maya Warren.  

If you want to share your HCM story, please email  julie@4hcm.org  to schedule an interview. Patient stories are essential to help educate and spread awareness about HCM!

HCMA Ambassador Program 

HCMA Featured Ambassador for September 2023 – Reinhard (Fritz) Kirchhof

A little about Fritz:  My Name is Reinhard Kirchhof. Everyone calls me Fritz. 72 Years old, retired, born in Frankfurt Germany, immigrated in 1957 with my parents and presently residing in Howell, New Jersey.  Diagnosed 27 years ago for HCM way before we had all these COE’s.  I am widowed from Janet, my wife of 44 years and have 2 sons, one of who is diagnosed with HCM. Additionally, I have 2 grandchildren, one of whom has also been diagnosed. Both are being followed. 

Click  HERE  to learn more about Fritz and our other HCMA Ambassador volunteers on social media.  If you would like to share your HCM experience via social media as an HCMA Ambassador, click  here  to apply for future workshops. 

Legislative Advocacy

Thank you to our volunteer state “Champions” in OH, FL, MA, DE, MD, NY, NV, CT, IL, IN and IA who are getting the word out to state legislators about the  Healthy Cardiac Monitoring Act (HCM Act).  We aim to pass the HCM Act into law in all 50 states. This effort takes a team!  If you are interested in helping any of our champions in the above states or, if you would like to become a champion in another state, email  julie@4hcm.org  to learn how you can get involved!

Free Online Patient Discussion Groups   

Our online discussion group meetings are recurring, but you must register for each meeting date. Our meeting dates, times, and topics are updated regularly, so check our event calendar regularly to join a meeting (or more than one) best suited for you!  

HCMA’s September 2023 Featured Discussion Group Leader:  Trudy Tynan

Trudy hosts a monthly “HCM Symptoms” Discussion Group. Click on our event calendar for exact dates and times to register for Trudy’s online discussion group.   Our free online discussion groups are open to all.

About Trudy:  My name is Trudy Tynan and I am retired after 30 years as a reporter with The Associated Press.  Fifteen years ago, I was diagnosed with HCM, at the age of 60, and have undergone and alcohol ablation and later an ablation for a-fib.  I work part-time as a writing tutor at Holyoke Community College in western Massachusetts where I live.  I have a passion for birding, especially seabirds.  Being a discussion group leader affords me the opportunity to help a group that will ultimately encourage and support each other in facing our own individual journeys with HCM.

To view our event calendar for our free online discussion group meeting dates and times, please click the following link:  Patient Discussion Groups – Hypertrophic Cardiomyopathy Association (4hcm.org)

HCMA Volunteer GEM Awards Program

The volunteer hours have been calculated from September 1, 2022 through August 31, 2023 and we would like to say congratulations to our HCMA Volunteer GEM Awards Recipients!  As a big “thank you!”, each GEM Award winner will receive prizes commensurate with the GEM level they have achieved.   

Ruby GEM (for Volunteers donating 80 + hours of their time):

  Emerald GEM (for Volunteers donating 40 – 79 hours of their time):

Gold GEM (for Volunteers donating 20 – 39 hours of their time):

Milla Arabadjian 

Karen L. Newstrom 

Tim Westhaver

Gwen Mayes 

Karen Klimczak 

Lekeshia Henderson

Fabian Metayer 

Leigh Bell 

Marc D. Block

Marion van Sinttruije 

Debra A. Rafson 

Lynda Neuhausen

Greg LeValley 

Trudy Tynan 

Sydelle Zinn

Rosemary Conlon 

Martin Maron 

Adam Salberg

Victoria Wyatt

Silver GEM (for Volunteers donating 10 – 19 hours of their time):

Amy Mann 

Maier Bianchi 

Lauren Donoghue-Cinelli

Ashley Fisher 

Judith Zerden 

Rush W. Roberts

Aaron Troy 

Alison Conklin 

Joey Graham

Elizabeth Wessman 

Breanna Restorick 

Alex de Feria

Debbie Hamilton 

Marsha Rosenberg 

Avonne White

Reinhard Kirchhof 

Susan Shapiro

Bronze GEM (for Volunteers donating 5 – 9 hours of their time):

Vi Tang 

Amy Lenhart 

Lisa Marie Vecchione

Benjamin Lee 

Melissa Holloway Schmidt

Click  GEM  to learn more about our HCMA Volunteer GEM Awards Program and how you can get involved. 

HCMA Blog

Medical Management May

April 30, 2025
Medical Management means using medicines and other non-invasive therapies to relieve symptoms. It's exciting that new treatments for HCM are being studied and that the FDA approved Camzyos in 2022! HCM can cause various symptoms depending on how stiff the heart is, how much scarring (fibrosis) there is, and whether there is obstruction. Some people have no noticeable symptoms. Common symptoms are chest pain/pressure, shortness of breath, lightheadedness, fatigue, palpitations, and brain fog. Syncope (fainting) is dramatic but not as common as the other symptoms. Medications are the first-line treatment for symptoms of HCM. If patients can't take one class of medication, they can try a medication from a different class. Here are some medications used to treat HCM and what they're for: Beta Blockers - make your heart beat slower and relax better. They allow the heart to fill more completely between beats. They can lower blood pressure and relieve symptoms. Calcium Channel Blockers - used to lower blood pressure and slow the heart rate. May reduce symptoms from obstruction in HCM. Myosin Inhibitors - cause the heart to beat with less force. They may reduce obstruction and septal thickness in some patients. Camzyos (mavacamten) is the first of this class of medication. For more information, click HERE . Antiarrhythmics - help to restore normal rhythm in the heart. Blood Thinners - anticoagulants and anti-platelets make it harder for blood to clot. They are prescribed to reduce the risk of stroke. This risk is higher in patients with afib, aflutter, and artificial heart valves. Diuretics , or "water pills," help the kidneys get rid of extra water and salt, reducing swelling in the body. Sodium Channel Blockers - may reduce gradient in obstructive HCM and can treat chest pain. Some also act as antiarrhythmics. Antibiotics - treat or prevent bacterial infections. In HCM, they may be given before dental work to prevent infective endocarditis. To learn more and see the side effects of these medications, click HERE .
On a green background, a line drawing of a head that has complicated arrows pointing outwards

Decisions in HCM: Why are they so hard?

By Gordon Fox • April 25, 2025
Part 2 of a series on making decisions in HCM. A key reason is that decision making is so difficult is that most decisions involve more than one risk.
Hypertrophic Obsctructive Cardiomyopathy

Camzyos® receives manufacturing and marketing approval for HOCM in Japan

By Erica Friedman • April 22, 2025
Bristol Myers Squibb announces that Camzyos has been approved for Obstructive Hypertrophic Cardiomyopathy in Japan.
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