Join HCM Patient Online Discussion Groups Here

My name is Danielle, and my advocacy is deeply personal. Both of my children and I have been diagnosed with HCM, and my daughter is a survivor of multiple sudden cardiac arrests. I’ve lost both my mom and my aunt to HCM, and live beside extended family members living with the disease.

Through my family’s journey, I understand firsthand the fear, uncertainty, and strength that come with an HCM diagnosis. I am passionate about creating safe spaces for connection, encouraging early cardiac screening, and helping families feel less alone as they navigate life with HCM. I’m committed to offering hope, education, and compassionate support to those seeking guidance and community.

I am a health educator working with the HCMA as an education writer and intake coordinator. I also lead a support group for people with traumatic brain injury. I have many years of experience teaching prenatal health, childbirth, breastfeeding, and infant care, as well as acting as a doula in the San Francisco Bay Area. I hold a BA in Psychology from the University of California, Berkeley, and a Master’s of Public Health from San Jose State University.

In my other life, I am a theater costumer who performs onstage sometimes, works backstage a lot, and loves performing at the Dickens Christmas Fair in San Francisco.

After 35 years of misdiagnosis of symptoms, I was finally correctly diagnosed with HOCM and referred to the COE at Stanford, where they did a quick trial of medications, and nine months later, I had a myectomy. I couldn’t walk half a block without being so short of breath I had to stop before my surgery. The surgery was life-changing for me, and seven years later, I have very few symptoms.

I am very LGBTQIA-friendly and respectful of all. I use my skills as a health educator to give back to the wonderful HCMA community and help people.

Matt Grant was born and raised in Rochester, New York, and now lives in Newport, Rhode Island, with his wife, their goldendoodle Bortus, and their first child, whom they welcomed in January 2026. A software engineer at Peloton, Matt was diagnosed at age 25 with obstructive hypertrophic cardiomyopathy (HCM), a condition that runs in his family—his mother recently received a heart transplant after battling end-stage HCM. Outside of work, he’s active in local politics, advocating for the passage of the Children’s Cardiac Safety Act in the Rhode Island General Assembly. Matt is a passionate sports fan (go Patriots) and music lover who believes deeply in community, awareness, and living life with heart.

I have spent over 40 years in the medical industry as a paramedic, in medical research, and as a phlebotomist. Being a paramedic and working with healthcare professionals, I believe, set me up to become an advocate and educator for others hearing those words for the first time…“You have a heart disease”.

I didn’t really start having issues until I was 48 years old. I ended up in the ER in rapid AFib with rapid ventricular response (RVR). It was almost 2½ years before I was officially diagnosed with HOCM. Luckily, I had a soon-to-be-announced COE, literally in my backyard. The care I received there was night and day difference to the way I was treated with the local cardiologists. This is one reason I strongly suggest to newcomers to get to a Center of Excellence. It does make a difference. I had a myectomy in 2017. Unfortunately, I started having electrical issues soon after. We tried for 2 years, but ultimately, I was transplanted in November of 2020. I was then re-transplanted in August of 2024. During the interim, I applied for the BSW program. I obtained my diploma in May of 2025 (right after my second heart transplant). My ultimate goal is to get my MSW and then work with the transplant population.

While I no longer have HCM, I gladly offer my services to help where I can. I am an HCM Ambassador, help on the education committee, and co-host the post-transplant support group. I also help those who have questions find answers when I can.

Steven Kelley was born and raised in East Hampton, Connecticut, and was diagnosed with non-obstructive HCM when he was 14. Steven is now based in Orlando, Florida, working as a sales and marketing professional with Disney Signature Experiences. Steven is a huge advocate for men’s mental and physical health. Networking and connecting with others is something Steven finds rewarding. Outside of work, Steven spends much of his time traveling and adventuring with friends.

Karen was diagnosed with HCM at 27 years old, with no family history, and after years of passing out/concussions (early 20s) during physical activity. Having grown up super active, playing tennis, hiking, and weightlifting, HCM wasn’t easy to understand or diagnose. Karen received a life-giving heart transplant on NYE 2020. As a support group co-leader, Karen hopes to support others along their transplant journey and life’s path. It is all possible because of great support (a huge village) and taking it one moment at a time.

Meet online discussion group leader Greg LeValley. Greg is a retired Police Sergeant who served in the United States Marine Corps. Greg was diagnosed with HOCM following a stroke in 2018. He has a subcutaneous ICD, had an atrial ablation for AFib, a septal myectomy, a Cox MAZE procedure, and an atrial appendage clip. Greg enjoys spending quality time with family and friends, golfing, fishing, and being outdoors, enjoying life to the fullest. He is extremely excited to be an online discussion group leader so he may help educate and support others with HCM and ease their minds going forward.

Dawn was diagnosed with HCM when she was seven years old, and she received her first heart transplant shortly after her thirty-eighth birthday. Almost thirteen years later, she received her second heart transplant. After the last transplant, she retired from the corporate world and is currently self-employed as a freelance writer. Among her writing endeavors, she maintains a blog that discusses various aspects of transplant life and features pictures of her dogs. Dawn currently lives in the suburbs of Detroit with her husband and two adorable little terriers. You can find her blog at www.dawnlevittauthor.com.

“Talk it Out” — heartfelt strategies to communicate with the important folks in your life about what it’s like living with HCM and how it affects your relationship with them. During the discussion, we will focus on one group (partners, spouses, children, friends, etc.) and talk through what we want to say and practice saying it aloud. We will encourage others to speak their truth and find the right words to say what needs to be said. Patients want to be heard and seen by those who matter most.

Greetings from online discussion group leader Gwen Mayes! Gwen is in her mid-60s and has had symptoms of HCM since childhood. She was diagnosed in her 20s and has done well with medication and lifestyle changes. Gwen is followed at two COEs and by a local cardiologist. To her, the frightening arrhythmias and emotional toll have been the most difficult to manage. She will focus on self-awareness and stress management as a discussion group leader. During her career, Gwen was a physician assistant and lawyer and spent 30 years as a health policy leader in Washington, DC. Today, she is a consultant and life coach, lives on the Chesapeake Bay in Annapolis, Maryland, and she sails, writes, paints, and enjoys entertaining.

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 got into Patient Advocacy. Along with being a Discussion Team 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 have a passion for helping people with rare diseases and also transplantation. I work as a volunteer for an Organ Donation group.

Meet online discussion group host Lynda Neuhausen. Lynda lives in Tampa Bay, Florida, and is a single mom of three. She experienced significant heart symptoms from age 39 but was not diagnosed with HCM until 46 and had two myectomies in 2012. Lynda was a retail manager for 20 years and started her career as an attorney just before her diagnosis. She loves spending time with her kids, traveling, and meditation/yoga. Learning to live with this illness has been a journey for her, and she is willing and ready to lend and facilitate assistance and support to others on their journeys.

Online discussion group leader Karen Newstrom welcomes you! Karen is 64 years old, married, a mother of five, and a grandmother to ten. She taught for eighteen years, seventeen in kindergarten. In her retirement, she enjoys playing oboe and substitutes when needed. Two of Karen’s brothers died at age 20 and 34 from HCM. Her father lived with it until he was 84. Two of Karen’s adult children have it, along with one grandchild, a niece, and a great-nephew. Karen was diagnosed as an adult and received an ICD due to family history. It has fired appropriately ten times! In 2010, she had a successful myectomy. Karen hopes to encourage others on their HCM journey.

My heart journey started after my son was born. I was diagnosed with HCM after he required emergency open-heart surgery at 2 weeks old. He was born with a congenital heart defect and also discovered that he had HCM. I went on to need an ICD placed in 2019 and had my septal myectomy in 2023. My sister also has a complex HCM case that led her to a heart transplant in 2025. I love being a listening ear and the biggest advocate for my loved ones.

I volunteered at Seattle Children’s Hospital and facilitated a parent peer support group for heart families before the COVID pandemic. We offered monthly peer support groups, quarterly family activities, and held several fundraising events for the Heart Center. In 2018, I was selected as a member of the Consumer Taskforce for Baby’s First Test for that year and advocated for the importance of pulse oximetry in newborn screening in Washington, DC.

I have my Master’s Degree in Education in School Counseling. I have been a school counselor since 2007 and worked at both the high school and middle school levels. I love supporting families through the ups and downs of their children’s educational journeys. I hope that every child can feel seen, supported, and valued. In my free time, I love spending time with my husband, two children, and our goldendoodle. We enjoy traveling, spending time outside, and playing board games. I look forward to connecting with other heart families in this space.

Meet online discussion group leader Paul Perlman. Paul is a retired lawyer from Orchard Park, NY. He was diagnosed with HCM in 2013 at the Cleveland Clinic and received an ICD later that year. His symptoms became more pronounced over the next three years, and he had a myectomy in 2016.

Since retiring in 2017, Paul has taught at a local college and served on its Foundation Board. He was also a general aviation pilot for 25 years before his diagnosis. Being an online support group leader is important to Paul because one of the greatest sources of anxiety for people living with HCM is fear of the unknown. He believes that anxiety can be reduced by sharing our questions and experiences.

Debra Rafson is a writer, patient advocate, and disabled chronic illness warrior. She was diagnosed with HCM in 2011 and had a septal myectomy and ICD implant in 2016. In 2024, she underwent a lead extraction and ICD replacement. Debra moderates the “Life with HCM” group and has been an HCMA Online Discussion Group Leader since the program’s inception in late 2020. Every week, Debra publishes her Substack newsletter, “What’s Her Problem?,” in which she tackles Issues at the Heart of Chronic Illness and Disability through personal essays, interviews, opinion pieces, and more (including her own life with HCM). She is the founder of The Open-Hearted Advocate LLC, where she offers her services as a writer, speaker, or podcast guest. Debra began her professional career as a Stage Manager, later transitioning from theatre production to administration, and ultimately becoming a Managing Director. She has also worked extensively in higher education administration. Debra is co-founder of Reasonable Accommodations LLC, through which she and a colleague provide the Patient Travel Planning Guides that are available on the HCMA’s website for each Center of Excellence (COE). Debra is proud to have recently completed Harvard Medical School’s Media and Medicine Certificate Program.

Join online discussion group leader Trudy Tynan. Trudy retired after 30 years as a reporter with The Associated Press. Trudy was diagnosed with HCM at the age of 60 and has undergone an alcohol ablation and later an ablation for a-fib at Tufts Medical Center in Boston. She now works part-time as a writing tutor at Holyoke Community College in western Massachusetts, where she lives. She has a passion for birding, especially seabirds. As a discussion group leader, Trudy welcomes the opportunity to help a group that will ultimately encourage and support each other in facing our journeys with HCM.

Lisa was born and raised in New Jersey. She was diagnosed with HCM in June 2004 and had had issues with her HCM for many years. According to Lisa, “I never dealt with it. My father also had HCM, and he passed at the age of 70 after many years of struggling.” In 2004, Lisa married Christopher Vecchione (upon diagnosis, boyfriend, now hubby!). Lisa was officially listed for transplant on March 29, 2022, status 4. Her heart transplant was on 6/20/22 at NYU Langone at the age of 49. About her transplant experience, Lisa said, “It went amazing! I am so Blessed! I was admitted late on June 19th and received a transplant the next day. Stayed in the Hospital until July 8th. And have done amazing since. I leaned on God for my strength, and it was supplied.”

Lisa worked as an Elementary school teacher and Junior high school teacher prior to going on disability. She has a teaching degree in Early Childhood Education and a degree from Union County Vocational-Technical in Cosmetology. Lisa is an HCMA volunteer, American Heart Ambassador, Unos Ambassador, Sharing Network Ambassador, AARP volunteer, UCCAlumni Association member, and Volunteer Rutgers 4H Union County. I head up running Church events at True Fellowship Ministry.

Meet online discussion group leader Sydelle Zinn. Sydelle was diagnosed with HCM at 53 after she became lightheaded on a trip to the zoo. Her cardiologist made HCM real to her — no alcohol, no caffeine! — and she received a septal myectomy in June 2010. Sydelle lives in Cleveland with her husband, a professor. They have one daughter. She formerly worked at the National Institutes of Health and is currently a volunteer in Cleveland’s Jewish community. For years, the HCMA has helped Sydelle navigate HCM. As a discussion group leader, she hopes to reassure people new to HCM that we can live with this disease.