HCMA Ambassador Program
“HCM...get to Know Us”
raising awareness through the power of social media
Get involved today
Did you know that the prevalence of Hypertrophic Cardiomyopathy (HCM) is 1 in 250 (or more) with approximately 85% of patients undiagnosed or misdiagnosed?
What if every person with HCM had an accurate diagnosis, access to proper care and felt a little less “alone” by hearing from another patient’s experience?
You can help make this happen by using social media to share your experience living with HCM as an HCMA Ambassador.
The HCMA has established a program to help HCM patients, caregivers, and families learn best practices to optimize their social media postings, tracking, and engagement.
There are 4.76 billion social media users worldwide. That is 59.4 percent of the world’s population! With several different social media platforms – Facebook, YouTube, Instagram, etc. – you can, as an HCMA Ambassador, become instrumental in assisting better outcomes for HCM patients.
HCM patients are in every zip code, corner of the Earth, income bracket, race, ethnicity, gender and age.
Ready to find out more?
As an HCMA Ambassador, we will help you provide consistency in messaging and accuracy in scientific knowledge.
You can post about your HCM journey from diagnosis to the current day. You can post about your experience finding the proper medication, care provider, or exercise regimen. You can post about your worries and fears and how you overcame them in a way that will inspire others. You can post as little or as often as feels right for you.
Apply today to become an HCMA Ambassador!
Note: Seating is limited for our HCMA Ambassador Program's orientation/training sessions. Applicants will be notified as additional orientation/training sessions are made available.
Join the HCMA Ambassador Program to raise awareness through the power of social media. “HCM...get to Know Us”.
Meet Our Ambassadors
Get to know the team of HCMA Ambassadors who are
raising awareness through the power of social media
Follow them on social media to help spread hcm awareness
I lived the majority of my life so far not knowing I had HCM at all. I just thought I was not fit, or something was wrong with my physical efforts. Turns out there was a reason for that.
In 2022 I was diagnosed with obstructive HCM via my primary physician who recommended I get an echo and see a specialist. It turns out there was a family history, but I was not aware of it. In late 2022 I had a septal myectomy at one of the HCM centers for excellence. I have found the HCMA to be invaluable for navigating my condition.
I am currently navigating my post-surgical outcomes while being a father of five and trying to spread awareness about HCM and genetic heart diseases within the eCommerce community.
My name is Breanna, I am currently 34 years old. I was originally diagnosed with HOCM in 2017 at the age of 29. Due to the severity of my obstruction, I had a septal myectomy in July of 2017, only a few months after diagnosis.
October 12th, 2018, I had my first ICD placed. I had an unsuccessful septal ablation done in 2019. Then, in July of 2021, I had an alcohol ablation that left me with complete heart block and caused me to need an additional lead from my ICD to pace me 100% of the time.
I am a mother to a beautiful teenage daughter who thankfully did not inherit this disease. My younger sister and her daughter, however, did.
My mom tragically passed away July 4th, 2018, at the age of 55. Her mother passed away in 2007 at the age of 66, both HCM patients.
I am ready to bring some light to this disease and spread as much awareness because a disease so common should be discussed more often. Let’s start saving lives! One heart at a time!
Facebook - Bre Kaysha
Instagram - heart_of_kaysha
LinkedIn - https://www.linkedin.com/in/brerestorick
Tik Tok - @_kaysha_23
YouTube - Breanna Restorick
Bill Rossi is an entrepreneur and veteran business leader in the Chicago area, a devoted partner and father of twin girls, an inspirational LGBTQ+ advocate, and a passionate proponent of health and fitness.
Bill founded Rossi Enterprises in 2005 and serves as the company's CEO, helping
startups and small- to mid-size organizations thrive in their industries by serving as their fractional chief operating officer and/or chief financial officer.
He applies his 20 years of experience as a leader and entrepreneur to foster innovation and provide guidance in operations, finance, accounting, marketing, risk management, and human resources. Bill helps his clients recover from business challenges and puts them on a path to greater success.
He has served as the COO/CFO at Earles Architects & Associates since 2008 and as CFO/integrator of It’s Just Lunch since 2001. Other clients where Bill has taken a leadership role include Plan B Advertising, Epic Gourmet Popcorn, SEAATS commercial office furnishings, and the nonprofit Open Roads Academy.
Most recently, he became COO of award-winning boutique public relations firm Mekky Media Relations, Inc. during the pandemic, helping to double the firm's size and triple its revenue in under two years. Bill is also a co-owner of several of these small businesses.
Bill is proud to be a business thought leader, teacher, and mentor. He is frequently called upon to share the stories behind his many successful professional endeavors, as well as the challenges and achievements that have been part of his personal journey as a member of the LGBTQ+ community and as someone who suffers from a rare and incurable heart condition, hypertrophic cardiomyopathy (HCM).
Bill is a member of the U.S. Chamber of Commerce Small Business Council, a board member of the HCMA Legislative Committee, a member of the LGBT Task Force in Illinois, and a mentor to the LGBT Chamber of Commerce of Illinois Entrepreneurship Program.
Crain’s Chicago Business recognized him as a Notable LGBTQ+ Executive in 2018,
2019 and 2020. By lending his leadership and voice and authentically sharing his story,
Bill incites meaningful conversation and personal growth. He gives others the
inspiration, confidence, or support they might need to move forward, overcome adversity and thrive in business and life.
Bill is a member of the Society for Marketing Professional Services and was
acknowledged with a Marquis Who's Who in America Award in 2021.
He received a bachelor’s degree in business administration and management from DePaul University in 1998 and a Master of Business Administration in marketing from DePaul University’s Graduate School of Business in 2001.
Facebook - @thebillrossi
Instagram - @thebillrossi
LinkedIn - @thebillrossi
Tik Tol - @thebillrossi
Hello! I’m in my mid-40s and began having HCM symptoms in my early 20s, was officially
diagnosed at 27 and endured a heart transplant on NYE 2020. I’m living well with my new heart,
learning a new “normal,” gratefully raising a healthy, active 6 year old, while enjoying
volunteering here and in my local school community and starting back to work.
Being the first in my family with a heart condition, especially as a younger person, felt like a
slap in the face. Like most of us, the desire for invincibility plagued me.. but HCM is very real.
A string of unexpected passing out episodes (with concussions) led to getting my HCM
diagnosis and first ICD in my late 20s. I had a total 3 life-saving ICDs and received numerous
appropriate shocks over the years from incessant ventricular arrhythmias. Despite a colorful
cardiac journey, my late 20s and 30s were active years of working and living in and around
Chicago, enjoying a ton of travel with my husband and savoring life. There were peaks of
challenging times figuring out how much activity, work, stress and self-care I’d need. I sought
out care from HCM COEs and a solid team, which included the HCMA for support. And there
were valleys of calm where I was able to get on with life, start a family and be blessed with a
daughter. Inevitably, HCM had plans of it’s own for me and required heart transplantation.
I am beyond grateful to my family, village, and one incredible donor who selflessly shared the
gift of life with me and allow me to journey on.
I’d love to connect with you and currently volunteer as part of the HCMA Ambassadors and
Transplant Pathway support group.
Ashley is a mother of two, wife and attorney who lives in Baltimore, Maryland. As a child, she was fairly active, and her family was not aware that HCM was part of their history. As she entered her late teens, she tried to stay active but noticed that she became short of breath and felt tightness in her chest even when she ran a small distance at a slow pace. She mistook this for being out of shape and not exercising frequently enough. Walks across her college campus left her red-faced and winded and no amount of "conditioning" improved her exercise tolerance.
When she was about 20 years old, her nurse heard a substantial heart murmur during a routine checkup. This prompted Ashley to follow up with a cardiologist who then diagnosed her with HCM. The diagnosis was far from a relief, but it did offer her an explanation as to why she could not participate in athletics to the same extent that her peers could. She was prescribed beta blockers that made her feel tired.
A few years passed and she began to show even more severity in her symptoms. She also began to feel more palpitations and presyncope (the feeling of almost passing out). The symptoms and high-risk factors for sudden death indicated that she would need an ICD (implanted cardioverter-defibrillator). Her first ICD was implanted just one month before she began law school in 2002. In 2005 she got married and while dancing at her reception, her ICD shocked her 6 times. Paramedics arrived and took an EKG, and by that time, she was back in normal rhythm. Interrogation of her ICD showed that she had experienced ventricular tachycardia.
Despite this, she considered herself to be a healthy person who could do whatever she wanted with the exception of a few exercises, as long as she stayed hydrated, took her medication, and watched her exertion level. A few years after having her first child, and under careful supervision of a high-risk OB and her cardiologist, Ashley gave birth to her first child. A year later, she had a few more incidences of ventricular tachycardia that resulted in shocks from her ICD. This second round of ICD shocks - though lifesaving - took an emotional toll.
Ashley had a second, and this time, complicated pregnancy. After giving birth to her second child, she had testing which confirmed that she needed to have an open-heart surgery called a myectomy. She had class 3 heart failure with shortness of breath, arrhythmia, and constant fatigue. After her myectomy, Ashley's symptoms improved to an extent, and she tried to maximize her overall heart health. She began eating a whole food plant-based diet, started walking (slowly) almost daily, and did Pilates weekly to stay as fit as possible. She also cut down on her regular 60-hour workweek in order to manage her stress. These changes, plus medication management and staying in close contact with her cardiologist, allowed her to stay somewhat active and lead a meaningful life while managing her symptoms.
Despite having an ICD and living a healthy lifestyle, Ashley began to notice a change in symptoms in the summer of 2021, including swelling, more fatigue, and greater shortness of breath, and went to her HCM specialist for an evaluation. It was discovered that her HCM had progressed to advanced heart failure with an ejection fraction of between 30-40% (normal for HCM is approximately 65%). She was referred to a heart failure doctor and was put on strong, temporarily effective heart failure medications. The medications were only so effective, and Ashley was given a heart transplant in March 2022. She continues to advocate for advancements in the treatment of HCM for the good of all those affected, including those within her own family.
Lekeshia Henderson is the CEO and Owner of A.I.D.E. LLC and is a native of Macon, GA. She became a volunteer with the HCMA in 2021 after her brother, age 33, suffered cardiac arrest and passed away due to obstructive HCM.
Since her brother’s passing, she has been committed to educating herself, her family and others on this genetic heart disease in hopes that she does not lose another loved one. Lekeshia has completed a genetic test that has not identified an HCM gene at this time and she receives annual cardiac screens. Her family is currently working on getting all 4 of her late brother’s children screened and tested for HCM as well as speaking with family so they know their options as well.
Outside of her business, entrepreneurship, volunteering and leadership titles, Lekeshia is a wife to her husband of over 9 years and mother of 4 children. She is a die-hard Atlanta Falcons fan and believes regardless of what other people think, you can always “Rise Up” from challenges and setbacks to become a better you.
Facebook - Lekeshia Henderson
Twitter - thereallekeshia
Instagram - thereallekeshia
Tik Tok - thereallekeshia
Joey Ulery Graham: Joey is a producer and news anchor for Public News Service. He anchors a daily statewide newscast and writes and produces news stories. Joey has more than 35 years experience working in Indiana newsrooms. He started his first job as a radio broadcaster when he was 16-years-old at his hometown radio station in Logansport, IN. He loved broadcasting so much…he eventually joined the broadcast team at WSAL on a full-time basis. Joey worked his way up the ladder from a young, local news reporter to News Director. For several years, Joey anchored Indy's Morning News at legendary news-talk station WIBC in Indianapolis-where he also hosted a weekend talk show. He resides in Westfield, IN. Joey is known for his natural curiosity to dig for all the facts and a relentless pursuit for truth. He is trusted and respected by peers and sources. However, he may be best known for his humor. In his spare time, Joey vlogs about living with Hypertrophic Cardiomyopathy. HCM is a hereditary disease which affects about 1 in 200 people. Joey is an HCM advocate and founding member of the HCMA steering committee for the group’s social media ambassador program. He is also a frequent guest on HCMA's "Tales from the Heart" podcast, and he edits and publishes the podcast.
Facebook - https://www.facebook.com/JoeysHCMJourney/
Twitter - @joeyulerygraham
Instagram - joeyulerygraham
YouTube - https://www.youtube.com/@joeyulerygraham
Lauren Donoghue-Cinelli was born and raised in the Boston suburbs and was diagnosed with HCM when she was 16 years old. During a routine well-visit her pediatrician suggested having a heart murmur checked as a precaution. While all was well that year, two years later at the next check up she was diagnosed. HCM runs in her family, though she was the first diagnosed.
Nearly 25 years, two ICDs and six heart surgeries later, Lauren is thrilled to be volunteering with the HCMA!
Lauren does campaign marketing for an events company, working 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, reviews 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, where they continue to debate getting a dog.
Follow her HCM Instagram account @laurenliz_hcmwarrior to follow her HCM journey!
My name is Debbie. I will soon be 58 years old. Even though I was officially diagnosed with HOCM in 2016, hindsight being what it is, I can now see where I had been symptomatic my whole life.
After myectomy surgery and ICD (then CRT-D) implant, my HCM heart finally gave up the ghost and I ended up on the heart transplant list. I was transplanted 11/27/2020.
It has not been an event-free recovery, but I am still here, and I am currently back in school to obtain a social work degree. I work on several volunteer projects, including two with the HCMA. For the HCMA I am on the Patient Education committee, and I am a member of their Ambassador Program.
When I am not doing schoolwork, I am outside taking care of my horses. I look forward to getting back to a place (health-wise) where I can once again take my horse, Daisy Girl, out for visits and bringing smiles to people’s day!
I have a blog post where I have somewhat chronicled my life with HCM.
Also follow Debbie on:
Facebook - Debbie Hamilton
"Alison, you are going to die if you do not get a heart transplant," my cardiologist said to me while I sat uncomfortably on the crinkly paper in his office. I looked down at my legs and took a breath. I remember thinking there is no way this is actually true. This isn’t what death looks like? Or feels like? I caught a glimpse of myself in the reflection of the art on the wall. Surely, he has to be wrong. I looked over at my husband, Geoff, who was sitting to my right; he looked horrified. We both stared at each other and I wondered what he was thinking. “Are you sure?” I heard myself ask. “How much time do I have?” I zoned out as my beloved cardiologist of almost two decades talked about levels, test results and complete heart failure but I didn’t miss it when he said: “We’re talking six months.”
We did what anyone who gets this sort of diagnosis does next. We followed the appointment by going to an Alanis Morissette concert that night. They were tickets we had for over three years, and finally, after a global pandemic and torrential rain had continued to push the concert back, we would experience it. I sang along with every word and buried all of the news to the back burner. Call it denial. I’ll call it survival.
The next day, our beloved Great Dane, Ringo, died suddenly. We had learned about his heart condition less than a month earlier and without warning on a normal Friday afternoon he was gone. That weekend we didn’t get out of bed. I didn’t do anything but cry and sleep. When Geoff and I finally got to a place where we had the strength to talk, we decided that I needed to do everything I could to try to get a heart transplant. So, I texted my cardiologist and told him I would start the listing process.
You have to understand that I always believed I was going to die at 42.
This may seem like a crazy statement, but when I was 14 years old, my mother died at the age of 42 of the genetic heart condition hypertrophic cardiomyopathy. Five months before her death, when I was 13 years old, I was diagnosed with the same genetic heart condition.
She died in the kitchen of my childhood home. We had been chatting while she was cooking when she suddenly said she didn’t feel well. I watched as she collapsed to the floor. I frantically gave her CPR that I had recently learned in a babysitting class and, as I held her in my arms, I begged her to wake up. I called 911 and my father, who was at work, to tell him the unimaginable. The woman we loved the most in the world was gone. That night after returning home from the emergency room, now as a family of two, I watched as my father slid against the front door sobbing.
I can’t articulate what it was like to lose my mother that way after being diagnosed with the same disease. I just know that the fear of having that same fate was something I carried since that hot July day. The number 42 has followed me around throughout the past 29 years—I always seem to grab the 42nd ticket when I am at the deli counter, when I walked the Turkey Trot 5K my bib was number 42, when I moved my father to an assisted living home his room number had 42 in it.
I was 42 years old when I was given this news of needing a heart transplant. For so many years, I looked at it like a curse, but then I started to see it as signs from my mother. I have always believed she is watching out for me.
The Power of Photography
While most kids my age were excited to start high school, I was suddenly a kid who had a team of cardiologists and specialists. I felt lost in my grief. My father, who was now a single parent to a teenage girl, taught me how to develop film and enlarge prints in a darkroom he built for me. I had become obsessed with the candid photos he and my mother had taken of me and of themselves. I used many of them for the photo wall I was put in charge of at her funeral. There were photographs they had taken that I had never seen before and that were now my most prized possessions. I used my mother’s camera as a way to navigate my sadness and I fell in love with photography and how powerful it is. I would eventually shoot my very first wedding at the age of 18.
On October 10, 2022, I was admitted to NYU Langone hospital to complete the listing process and wait for a heart. I packed my suitcase with the knowledge that I may be there a long time. My hope was to at least be home by Christmas if not Thanksgiving but, truly, I had no idea what to expect. I had a septal myectomy via open heart surgery five years earlier and multiple other heart surgeries, so I figured I would have a handle on whatever was headed my way. (Spoiler alert: I couldn’t have been more wrong.) After about one week of completing the tests, I was officially listed at Status 2 on the transplant list. The days were long in the hospital. I would walk the halls to stay as active as I could and sometimes I would chat with other patients who were also waiting. I made friends with the nursing staff (they were amazing) and three days later on one of my laps around the unit, a doctor came up to me and asked if we could talk. Not thinking for a second it was about a heart, I sat down on my hospital bed and he sat across from me. Out came the words: "We have a heart we believe will be a perfect match for you, Alison."
It had been three days since my name was on the list and, suddenly, I was being prepped for surgery. I called my husband and he gathered the kids and drove to New York City so I could hug everyone one more time. I am a mother of two boys, both of whom are adults now—even if I will always see them as my babies. When I was told my donor was a man in his 30s, the very first thought I had was of how he was someone’s son. I was inconsolable. There is such complete gratitude for this amazing gift of a second chance, but it comes with the knowledge of how tragic it all is.
When the surgical team was ready, the entire nursing staff stood outside of my door playing the song “Milkshake.” With the words “my milkshake brings all the boys to the yard” playing, we danced our way right into the operating room. Then, of course, from Rocky, “Eye of the Tiger.” As I lay on the table watching everyone run around and get ready, I started to feel completely overwhelmed. I closed my eyes and thought of my husband and my boys. I let myself imagine for a minute what my life may look like if I survived this transplant—being able to walk without being out of breath, being able to take the stairs, and simply being able to live. The anesthesiologist counted me down as I talked about photography and our shared love of Fujifilm, and the next thing I knew, I was awake, intubated and in the ICU. The surgery had lasted overnight, taking over 10 hours to complete.
I could write obsessively about how hard this has all been, how I work every day to keep myself healthy, about the anxiety and the fear. I could talk about taking handfuls of life-saving medications every day on a strict schedule, multiple times a day for the rest of my life. At the time I am writing this, I am getting ready for my eleventh heart biopsy and right side catheterization at the hospital in a few days. All of that is a large part of my story, and it is not easy, but what matters more than any of it is that I am here.
I celebrated my boys’ birthdays. I sat next to my son Moses as he bought his first car. We have gone hiking together as a family (and please reread that sentence because I could actually hike for the first time). I have taken walks with my oldest son Jonas and had the most touching conversations.
I turned 43 in May.
I have laughed way too loudly with friends and have shared adventures with my love, Geoff. I have learned so much over the past few months. We have all been changed in beautifully heartbreaking ways through this experience. One of the biggest things is to simply be happy right now. Don’t wait for this to happen or for things to be worked out or perfect—because let me tell you, that doesn’t exist. Celebrate now. Everything is a miracle and I am grateful for all of it just as it is. For the amazing moments and for the struggles, I get to be here.
One thing I like to say is “I get to” rather than “I have to.” If there is one thing you take away from reading this, please let it be that. You get to grocery shop. You get to fold and put away the clothing of your loved ones. You get to take your dog for a walk. You get to go out to dinner with your in-laws.
You get to do all the wonderful and not-so-wonderful things in life and that change in perspective should open up a world of gratitude.
Oh, and the final takeaway, please be an organ donor. You never know whose life you may save.
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. I worked as a service engineer for fortune 500 electronics companies most of my career and retired in 2016 as National Service Manager for the Commercial Microwave Division. I also Served in the United States Naval Air Reserve from 1970 to 1976, honorably discharged in 1976. Served as a Councilman in Howell Township from 1998 to 2002 and was appointed Deputy Mayor in 2001. Currently I serve as a 4th Degree Sir Knight in The Knights of Columbus at Saint Martha’s in Point Pleasant, NJ. I am an active Amateur Radio Operator, W2CET, Extra Class, where I enjoy speaking with people all around the world on the radio. I also enjoy photography and listening to operatic metal and since I live near the beach, nice walks on the beach or boardwalk.
I’ve been a member of the HCMA since almost the beginning, where I met Lisa Salberg, CEO and Founder of the Hypertrophic Cardiomyopathy Association (HCMA) at a symposium in Morristown many years ago. Just amazing what Lisa has accomplished!!
I had a very active life, but at the age of 45 I started noticing minor symptoms while exercising, then during a routine Physical and an EKG, the cardiologist noted an abnormal ekg. A subsequent Stress test confirmed that I have IHSS (a name used years ago for HCM). As the years progressed, I became more and more symptomatic which eventually led me to a COE where it was confirmed that I have Apical Non-Obstructive HCM. In 2003 they noticed some non-sustained ventricular tachycardia which led to my 1st ICD implant. As of Today, I am on my third one. 10 years ago, I started with Afib which led me to multiple cardioversions and subsequent ablations at a COE. One in 2020 and one in 2022. To date I am on some meds to help manage my HCM.
As for my family history, my mother was genetically tested and was positive. She also had 2 sisters and a brother. One of her sisters, although not tested, was certain to also have the disease. Going back further it appears that my grandmother may have also had HCM.
Facebook - Reinhard Kirchhof
Twitter - @FritzKirchh1
Instagram - fritzkirchhof
YouTube - www.youtube.com/@fritzkirchhof
Greetings! I'm in my mid-60s, and have had symptoms of HCM since childhood, diagnosed in my 20s, and have done well with medication and lifestyle changes. I'm followed at two COEs and by a local cardiologist. For me, the frightening arrhythmias and emotional toll have been the most difficult to manage.
I am also an HCMA online discussion group leader. During my career, I was a physician assistant, lawyer, and spent 30 years as a health policy leader in Washington, DC. Today I'm a consultant and life coach, live on the Chesapeake Bay in Annapolis, Maryland, and sail, write, paint, and enjoy entertaining.
Facebook - https://www.facebook.com/gwen.mayes/
Instagram - @gwenmayes
My heart story began in the fall of 2021, at a routine doctor's appointment, I was told that I should see a cardiologist for a heart murmur. After an echocardiogram and wearing a heart monitor, my cardiologist detected HCM. He told me I was at risk of sudden cardiac death, and a week later I had my first cardiac arrest while at the gym. Luckily, my gym was equipped with an AED and many CPR certified "angels". At the local hospital, they implanted an ICD and sent me on my way. However, 3 months later, my ICD went off in response to my second cardiac arrest. I had a septal myectomy in July 2022 at the Mayo Clinic in Rochester, MN and I feel like a new person today.
Susan Shapiro retired as a Client Relationship Manager from Voya Financial in April 2020 after a 30 year career of working with corporate sponsors of 401(k) plans. Starting in April of 2017, Susan also joined the leadership team of Indivisible Lambertville (NJ)/New Hope (PA), a grass-roots activist organization dedicated to electing progressive candidates, defending democracy and holding elected representatives accountable to their constituents. After moving to Flagstaff, AZ, Susan founded Indivisible Northern AZ in order to continue her activism.
Susan’s family has a long history of HCM and SCD. After being “cleared” several times, Susan was finally correctly diagnosed with HCM in December 2010 and received an ICD shortly thereafter. After losing another family member to HCM, Susan used what she had learned from the HCMA as she set out to educate her family members about risk assessment, genetic testing, and COEs in hopes of preventing another tragedy. Susan looks forward to using her experience to help expand awareness of HCM, and of the programs offered by the HCMA to improve outcomes and save lives.
Victoria was diagnosed with HCM at 14 years old and lived with symptoms that became progressively worse over time. At 26 years old she had a myectomy followed by an ICD implant. Over the next few years, her symptoms got worse, which is unusual for post-myectomy. At 29 she was listed for a heart transplant. On October 16, 2019 she was admitted to the hospital to receive her heart transplant.
Today she lives in Michigan with her husband and her very unique heart collection of her own.