Olivia Esposito • July 26, 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)

HCMA Theme of the Month Stories

Our HCMA themes for August are “Newly Diagnosed or Change in Symptoms/Status” and “Adjusting the Sails,” featuring the story of Armonnie (Monnie) Hawkins. 

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 

Please follow our HCMA Ambassadors on social media. Like, comment, or share their posts to help them spread awareness about HCM. 

#4hcm

#BigHeartBigLife 

#hypertrophiccardiomyopathy 

HCMA Featured Ambassador for August 2023 – Lauren Donoghue-Cinelli

About Lauren: Lauren was born and raised in the Boston suburbs and was diagnosed with HCM when she was 16. During a routine well-visit, her pediatrician suggested having a heart murmur checked as a precaution. While all was well that year, she was diagnosed two years later at the next check-up. HCM runs in her family, though she was the first diagnosed.

Nearly 25 years, two ICDs, and five heart surgeries later, Lauren is thrilled to be volunteering with the HCMA!

Lauren does campaign marketing for an events company, works with healthcare and life science companies, and loves to read and buy books (which are two different hobbies!). Follow her bookstagram account @laurenlizlibrary to see recommendations and funny memes about reading! She loves spending time at her home-away-from-home, Lake Winnipesaukee in New Hampshire and currently lives with her husband in the Boston suburbs. They continue to debate getting a dog!

Follow Lauren on social media and help spread awareness about HCM:

Facebook – Lauren Donoghue-Cinelli

Twitter – laurenliz615

Instagram – laurenliz615 and laurenliz_hcmwarrior

LinkedIn – Lauren Donoghue-Cinelli

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

We are looking for “Champions” in every state to get the word out to legislators about the Healthy Cardiac Monitoring Act (HCM Act). We aim to pass the HCM Act into law in all 50 states. State Champions will be trained and supported through the process, from beginning to end, by HCMA staff members and members of the HCMA Legislative Committee. We’ve had a lot of interest from our community (thank you!), and we will reach out in August to those who have already signed up to volunteer for our legislative effort. If you have not already signed up, it’s not too late. Sign up to be a legislative volunteer

To view the HCM Act proposed legislation, click the following link:  Health Cardiac Monitoring Act – Hypertrophic Cardiomyopathy Association (4hcm.org)    

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 August 2023 Featured Discussion Group Leader:  Linda Montgomery

Linda hosts our “Newly Diagnosed” education groups. These free online education sessions are ideal for those newly diagnosed (within the past two years) or those new to the HCMA. Linda offers several dates ×s each month to make it convenient for all to attend.

About Linda: I am one of seven children, which has taught me how to get along with different personalities, stand up for those who need it, and never forget where I came from.  I’ve had an amazing career in Global Pharmaceuticals over the past couple of decades.  Getting closer to the patients was always my goal, so I changed careers and entered Patient Advocacy as an employee of the HCMA.  As an HCMA employee and a Discussion Group Leader of the Newly Diagnosed, I’ve had the privilege of conducting many of your Intake Calls. I hope I’ve made you feel warmly welcomed into the HCMA community.

While I do not have HCM, I am passionate about helping people with rare diseases and transplantation.  I work as a volunteer for an Organ Donation group.

I live in NJ, and in my time away from the office, I enjoy visiting my son in Dallas, spending time with my English Bulldogs, and being outdoors.

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

HCMA Volunteer GEM Awards Program

Please remember to log your volunteer hours regularly to participate in our Volunteer GEM Awards (VGA) program and be recognized at the end of the year with fun prizes and other forms of appreciation. Click GEM to learn more about our HCMA Volunteer GEM Awards Program and how you can get involved.

HCMA Blog

A pregnant woman and partner make a heart with their hands over the baby.

HCM in Pregnancy

By Sabrina Cuddy • June 12, 2025
Pregnancy is a stress on the body even for healthy people. When we have a serious disease, we tend to have even more questions. Health Educator Sabrina Cuddy answers some of the most common questions about HCM and Pregnancy.
Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.

Decisions in HCM: My Risk Estimate was Wrong!

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.

Lisa's Letter - June Newsletter

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
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