Lisa • February 28, 2023
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 are serving. One of my personal challenges has been how to communicate effectively on topics that are critical to the patient journey experience, including why tests are needed, where they can be done most effectively, what these tests and procedures are, and provide these and other important items in a place you can revisit them later. Additionally, we wanted to create a way to update records effectively to prepare for navigation calls as well as provide updates on frequently asked questions, quick updates of changes in care guidelines, or educating people with new opportunities.

Nest is the KEY!

Lisa Salberg – Cheers

Here is an interview I had during HCM Awareness Day with Moran Snir, the founder/CEO of Nest Genomics. We review our goal for the Nest portal and how we work together.

More answers: Nest FAQ

I hope you are as excited about this new tool in our toolbox to help support you and the HCM community. Together, we can make things better for the diagnosed, find the undiagnosed, help with new treatment options, and learn together to save lives.

We are rolling it out in stages, so please be patient as we launch, but when we reach you, please don’t let our invitation to participate sit too long. We need to help over 10,000 people have their turn to join us in the HCMA Nest Portal. If you have questions, don’t hesitate to get in touch with our office: pm@4hcm.org

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
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