Sabrina Cuddy • December 23, 2024
The HCMA theme for January is Setting Your Plan For The Year

You must advocate for yourself to get the best care for your HCM. The first step is to have a plan that includes the tests you need and how often to see your cardiologist. To make planning easier, the HCMA offers Navigation Calls. We encourage everyone with HCM to complete our  Intake and Navigation Call  at least once to help you get on track with your care. This is a free service, although paid members may take advantage of extra calls if needed during the year.

We encourage you to see an HCM expert at an  HCMA Recognized Center of Excellence (COE). We are growing this program to give you more options. For those outside the US, we can often help you find an HCM expert, although we have yet to cover every country.

Is cost limiting your ability to fully take advantage of HCMA services? We offer scholarship memberships. You can apply alone or with your application to the Lori Fund, which grants up to $600 per year to cover the cost of traveling to a COE.

For stable HCM patients, here are some general guidelines for regular  testing

  • Annual Echocardiogram
  • Annual EKG and/or Ambulatory Monitor
  • Annual cardiologist visit
  • Cardiac MRI every 3-5 years

If your symptoms change, you should contact your cardiology team to discuss whether a medication change or other treatment would help you stay stable. Be flexible in your plan to handle changes in your situation. Remember, each patient is different – some can safely go 2-3 years between visits, while others may need to see their team every six months or less.

HCMA Blog

Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.
By Gordon Fox June 9, 2025
In the fifth in a series. Gordon Fox, PhD. looks at the impact of risk estimates in HCM and delves into what it means if the risk estimate seems off.
By Lisa Salberg June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
A mixed race family in denim walks down a road, the child on a tricycle
By Sabrina Cuddy June 4, 2025
Experts agree that exercise is healthy for people with HCM. Depending on symptoms, most people with HCM can safely do at least light exercise. Learn more in this month's blog pog post by Health Educator Sabrina Cuddy.
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