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

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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