Julie Russo • March 29, 2024
Volunteer!

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 involved, contact julie@4hcm.org or click HERE.

Share Your Story (SYS)

HCMA Theme of the Month Stories

The HCMA themes for April 2024 are “Genetics/Family History” and “Genetic Therapies,” featuring the story of Collin Dolder.

Collin and his wife conceived their son using In vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD). He was born healthy and with no gene mutation.

Collin has been connected with the HCMA for over 20 years.  Starting as a child himself, through having a child of his own. 

To read more about Collin’s HCM journey, click HERE.

If you are a patient (or the parent/guardian of a patient) and are interested in sharing your story about your HCM journey, we need patient stories now more than ever to help educate and spread awareness about HCM.  To sign up to Share Your Story, click HERE.  Under “Projects,” choose “Share My Story Volunteer Group.”

HCMA Ambassador Program 

HCMA Featured Ambassador for April 2024 – Joey Ulery Graham

Joey Ulery Graham

A little about Joey… ”Joey is an HCM advocate and founding member of the steering committee for the HCMA Ambassador Program.  He is a frequent guest on HCMA’s “Tales from the Heart” podcast…” Click HERE to learn more about Joey and follow him and our other HCMA Ambassador volunteers on social media. 

#4hcm

#BigHeartBigLife 

#hypertrophiccardiomyopathy 

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

Ohio Representative Sara P. Carruthers is the Bill Sponsor for HB 356 , the “Healthy Cardiac Monitoring Act” (HCM Act).  The HCMA drafted the HCM Act with components designed to help find undiagnosed HCM patients and patients with other genetic cardiac diseases by adding family heart health history questions to the “Well-child” examinations. There will be a hearing some time in May 2024 at the State House in Columbus, OH, with patients and physicians testifying in support of this important legislation.  If you are an Ohio constituent interested in attending or testifying during this hearing to show your support, contact Julie at julie@4hcm.org for more details.  

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 April 2024 Featured Discussion Group Leader:  Sydelle Zinn

Sydelle co-hosts a monthly “ICD” Discussion Group. Click on our event calendar for exact dates and times to register for Sydelle’s, or any of our other volunteer led online discussion group.   Our free online discussion groups are open to all.

About Sydelle:  

“My name is Sydelle.  I was diagnosed with HCM at 53, after I became lightheaded on a trip to the zoo.  My cardiologist made HCM real to me: no alcohol and no caffeine!…”

Click HERE to learn more about Sydelle and to view other online discussion group leader bios and themes.                 

HCMA Blog

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
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
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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