Hypertrophic cardiomyopathy or HCM can be a debilitating and life-changing cardiovascular
disease that reduces physical function and overall well-being. HCM affects between 1 in 200
and 1 in 500 people in the general population, yet many people don’t know they have it.

The HCMA has changed many people's lives, by acting as a beacon of light in the darkness. By providing clarity in a time clouded by health issues, stress, emotional exhaustion, and concern for the future. This page presents some of those stories in the hope someone struggling understands that they are not alone, but part of an HCM community strengthened by the HCMA.

Lisa Salberg

I am not only the CEO... I am a patient

In 1953 my grandfather suffered a sudden cardiac arrest at his home at the age of 43, and my father was then 18 yrs. old attempted to do chest compressions to save him, it failed. In 1990, my uncle, age 47, died suddenly while at an event a few hours from his home in Montana, and then my sister was lying lifeless in a bed hooked up to machines... This was the day my life changed, June 12, 1995. Little did I know that February 2, 2017 would change my life even more. "

Meet our HCMA Ambassadors

Gwen Mayes

More about Gwen - Click Here

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.

Follow Gwen:

Facebook - https://www.facebook.com/gwen.mayes/

Instagram - @gwenmayes

LinkedIn - https://www.linkedin.com/in/gwen-mayes-jd-mmsc-4511178/

Lekeshia Henderson

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.

More about Lekeshia - Click Here

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.

Follow Lekeshia:

Facebook - Lekeshia Henderson

Twitter - thereallekeshia

Instagram - thereallekeshia

LinkedIn - https://www.linkedin.com/in/lekeshia-henderson-801921146

Tik Tok - thereallekeshia

Maier Bianchi

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.

More About Maier- Click Here

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.

Follow Maier:

Twitter: https://twitter.com/maierb

Instagram: @maierbianchi

LinkedIn: https://www.linkedin.com/company/hearts-of-commerce/about/

Breanna (Bre) Restorick

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.

More about Bre- Click Here

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!

Follow Bre:

Facebook - Bre Kaysha

Instagram - heart_of_kaysha

LinkedIn - https://www.linkedin.com/in/brerestorick

Tik Tok - @_kaysha_23

YouTube - Breanna Restorick

Joey Ulery Graham

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.

More about Joey - Click Here

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.

Follow Joey:

Facebook - https://www.facebook.com/JoeysHCMJourney/

Twitter - @joeyulerygraham

Instagram - joeyulerygraham

YouTube - https://www.youtube.com/@joeyulerygraham

Bill Rossi

Bill Rossi is an entrepreneur and veteran business leader in the Chicago area, as well as a devoted partner and father of twin girls, an inspirational LGBTQ+ advocate and a passionate proponent of health and fitness.

More About Bill - Click Here

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.

Follow Bill:

Facebook - @thebillrossi

Instagram - @thebillrossi

LinkedIn - @thebillrossi

Tik Tol - @thebillrossi

Lauren Donoghue-Cinelli

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 checkup she was diagnosed.

More about Lauren - Click Here

HCM runs in her family, though she was the first diagnosed.

Nearly 25 years, two ICDs and 5 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 and funny memes about reading! She loves spend 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:

Facebook - Lauren Donoghue-Cinelli

Twitter - laurenliz615

Instagram - laurenliz615 and laurenliz_hcmwarrior

LinkedIn - Lauren Donoghue-Cinelli

Reinhard (Fritz) Kirchhof

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.

More about Fritz - Click Here

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.

Follow Fritz:

Facebook - Reinhard Kirchhof

Twitter - @FritzKirchh1

Instagram - fritzkirchhof

LinkedIn - www.linkedin.com/in/reinhard-kirchhof-a94b5011

YouTube - www.youtube.com/@fritzkirchhof

Alison Conklin

Alison's story was featured in Lehigh Valley Style magazine in August 2023.

"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?

More about Alison- Click Here

Karen Klimczak

More about Karen - Click Here

With the incredible support of the HCMA and an amazing healthcare team/Center of Excellence, I received an ICD and learned that ventricular arrhythmias from HCM were causing these episodes. Having survived many life-saving ICD shocks and proactive care, I’ve been living fully- having a career as a Registered Dietitian, lots of travel, enjoying a wonderful marriage and becoming a mom to a fascinating daughter (now 6).
I am incredibly grateful to have received a life-giving heart transplant on NYE 2020.

Karen co-hosts our "Transplant Pathway" monthly discussion group along with Amy Mann. Click on our event calendar for exact dates and times to register for this online discussion group. Our free online discussion groups are open to all.

"As a support group co-leader, I hope 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."

Follow Karen:

Facebook - DustinKarenKlimczak

Instagram - KarenK_heart

LinkedIn - www.linkedin.com/in/karen-klimczak-rdn-chwc-5aa7039

Susan Shapiro

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.

More about Susan - Click Here

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.

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.

Mary Ann Daniel

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.

More about Mary Ann - Click Here

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.

I am 26 years old from North Carolina with a family history of coronary heart disease. After my diagnosis, my whole family was screened for HCM and it turns out my mother has it. Knowledge is power so I want people to educate themselves on their health and be aware of their bodies.

Follow Mary Ann:

Instagram - @maryannbdaniel

Facebook - Mary Ann Broughton

LinkedIn - Mary Ann (Broughton) Daniel

Meet our HCMA

Online Discussion Group Leaders

SYDELLE ZINN

Meet online discussion group host, Sydelle Zinn. Sydelle co-hosts a monthly “ICD” Discussion Group. Click on our event calendar for exact dates and times to register for Sydelle’s online discussion groups. Our free online discussion groups are open to all.

More about Sydelle - Click Here

My name is Sydelle Zinn. I was diagnosed with HCM at 53, after I became lightheaded on a trip to the zoo. My cardiologist made HCM real to me; no alcohol and no caffeine! I received a septal myectomy in June 2010. I live in Cleveland with my husband, who is a professor, and our daughter. I used to work at the National Institutes of Health, and currently volunteer in Cleveland's Jewish community. For years, HCMA has helped me navigate HCM. As a discussion group leader, I hope to reassure people new to HCM that we can live with this disease.

Bob Eldridge

Meet online discussion group host, Bob Eldridge. Bob co-hosts a monthly “General Discussion of Life with HCM” Discussion Group. Click on our event calendar for exact dates and times to register for Bob’s online discussion group. Our free online discussion groups are open to all.

More about Bob - Click Here

My name is Bob Eldridge. I am a husband, father, musician, entertainer and a retired school teacher. I have run discussion groups over the years, including singles groups, and have provided music therapy and discussion groups for two senior citizen centers in the Bronx. I have a B.S. in Psychology with a minor in education. I feel as a discussion group leader I will be empathetic while also being helpful and encouraging.

LISA SALBERG

Lisa is HCMA's Founder and CEO. Lisa holds three online discussion groups monthly to educate and support those who are newly diagnosed, on a transplant pathway or preparing for a myectomy. Click on our event calendar for exact dates and times to register for one of Lisa's meetings. Our free online discussion groups are open to all.

More About Lisa - Click Here

I was diagnosed at 12yrs old (knowing the family history of HCM with the loss of my grandfather in 1953).

Tragedy struck with the loss of my sister at age 36 in 1995. She was diagnosed with HCM but was mismanaged. This was on the forefront of my mind constantly and preempted me
to create the non-profit HCMA in 1996 to advocate for HCM awareness, education, resources, research, and support.

We have helped thousands of HCM patients in the United States and the association continues to grow each year, including recent international outreach as well.

GWEN mAYES

Meet online discussion group host, Gwen Mayes. Gwen hosts a monthly “Emotional Support” Discussion Group called "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 outloud. We will encourage others to speak their truth and find the right words to say what needs to be said. As patients, we want to be heard and seen by those who matter most. Click on our event calendar for exact dates and times to register for Gwen’s online discussion group. Our free online discussion groups are open to all.

More about Gwen - Click Here

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. As a discussion group leader, I will focus on self-awareness and stress management. 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.

Debra Rafson

Meet online discussion group host, Debra Rafson. Debra hosts a monthly “Life with HCM” Discussion Group.

Click on our event calendar for exact dates and times to register for Debra’s online discussion groups. Our free online discussion groups are open to all.

More about Debra - Click Here

Debra Rafson was diagnosed with HCM in 2011. In 2016, she had a septal myectomy and ICD implant at Tufts Medical Center. She spent most of her career in professional theatre as a stage manager and managing director in the Boston area. Currently, a resident of South Florida, Debra spends her free time watching tennis, binge-watching tv, doing NY Times crossword puzzles, and listening to podcasts or musical theatre soundtracks. She is excited to meet fellow HCM-ers and share our journeys.

Amy Mann

Meet online discussion group host, Amy Mann. Amy co-hosts our "Transplant Pathway" monthly discussion group along with Karen Klimczak.

Click on our event calendar for exact dates and times to register for this online discussion group. Our free online discussion groups are open to all.

More about Amy - Click Here

I am the mother of four wonderful humans and married to a fantastic man. I have lived, received an education, and worked in England and the USA.

I was diagnosed with HCM at age 5, inherited from my mother. I have numerous family members with HCM, including at least one of my children. I’ve had quite a health journey while trying to maintain normalcy for my family and myself. I had a myectomy at age 30 and an implantable defibrillator at 31. I developed heart failure in 2016, leading to a cardiac transplant in 2018. My experiences have driven me to advocate for others with HCM and those going down the heart transplant pathway.

I’m also a former midwife who worked at a bustling outer London hospital. In addition, I have extensive experience working for and volunteering for cardiac nonprofits in strategy, project management, and project coordination (I’ve worked for and volunteered for both the HCMA and Cardiomyopathy Uk). Currently, I am working on a HealthCare Advocacy Certification, am a UNOS Ambassador, and am on a Clinical trial steering committee for a biopharmaceutical company developing a drug to treat HCM. I am also working on several other endeavors relating to HCM and Heart Transplant Advocacy.

The Transplant Pathway support group is for those in the process of listing and those who are listed and post-transplant. Caregivers are also welcome. As a co-host, I am passionate about creating a safe space to discuss everything transplant related. We aim to offer peer support and share our experiences, creating a community to make the transplant pathway less lonely and frightening.

PAUL PERLMAN

Meet online discussion group host, Paul
Perlman. Paul co-hosts a monthly “All Things
Myectomy” Discussion Group and also hosts our "Pre-Myectomy" education session for patients who are scheduled for myectomy surgery. Click on our event calendar for exact dates and times to register for Paul’s online discussion group. Our free online discussion groups are open to all.

More about Paul - Click Here

I am Paul Perlman, a retired lawyer from Orchard Park, NY. I was diagnosed with HCM in 2013 at the Cleveland Clinic, and received an ICD later that year. After my symptoms became more pronounced over the next three years, I had a surgical myectomy in 2016.
Since retiring in 2017, I have taught at a local college, and served on my college's Foundation Board. For 25 years before I was diagnosed, I was a general aviation pilot.
Being an online discussion group leader is important to me because one of the greatest sources of anxiety to people living with HCM is fear of the unknown. I believe that anxiety can be reduced by sharing our questions and experiences.

Karen Newstrom

Meet online discussion group host, Karen Newstrom. Karen co-hosts a monthly “ICD”
Discussion Group. Click on our event calendar for exact dates and times to register for Karen’s online discussion group. Our free online discussion groups are open to all.

More about Karen - Click Here

I am 62 years old, married, a mother of five and grandmother to eight. I taught for eighteen years, seventeen in kindergarten. In my retirement, I enjoy playing oboe and substitute when needed.

Two of my brothers died at age 20 and 34 from HCM. My father lived with it until 84. Two of my adult children have it, along with one grandchild and a niece. I was diagnosed as an adult and received an ICD due to family history. It has fired appropriately eight times! In 2010 I had a successful myectomy.

I hope to give others encouragement on their HCM journey.

greg levalley

Meet online discussion group host, Greg LeValley. Greg co-hosts a monthly “All Things
Myectomy” Online Discussion Group. Click on our event calendar for exact dates and times to register for Greg’s online discussion groups. Our free online discussion groups are open to all.

More about Greg - Click Here

My name is Greg LeValley. I am a retired Police Sergeant and served in the United States Marine Corps. I was diagnosed with HOCM following a stroke in 2018. I have a subcutaneous ICD, had an atrial ablation for AFib and most recently a septal myectomy, Cox MAZE procedure and atrial appendage clip. I enjoy spending quality time with family and friends, golfing, fishing and being outdoors enjoying life to the fullest. I am extremely excited to be an online discussion group leader so I may help educate others with HCM and ease their minds going forward. I look forward to meeting you!

lynda neuhausen

Meet online discussion group host, Lynda Neuhausen. Lynda hosts a monthly “Emotional
Support” Discussion Group. Click on our event calendar for exact dates and times to register for Lynda’s online discussion group. Our free online discussion groups are open to all.

More about Lynda - Click Here

I live in Tampa Bay, Florida and am single mom of three, 19, 21 and 24. I experienced major heart symptoms at age 39, but not diagnosed until 46. I had 2 myectomies in 2012 and continue to struggle with symptoms. I was a retail manager for 20 years and started career as attorney just before diagnosis. I love spending time with my kids, traveling, and meditation/yoga. Learning to live with this illness has been a journey, and if I can lend and facilitate assistance and support to others on theirs, I think it can bring us all hope and courage.

trudy tynan

Meet online discussion group host, 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.

More about Trudy - Click Here

My name is Trudy Tynan and I am retired after 30 years as a reporter with The Associated Press. Fourteen years ago, I was diagnosed with HCM, at the age of 60, and have undergone an alcohol ablation and later an ablation for a-fib at Tufts Medical Center in Boston. I work part-time as a writing tutor at Holyoke Community College in western Massachusetts where I live and 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.

Sabrina Cuddy

Meet online discussion group host, Sabrina Cuddy. Sabrina is a host for our monthly “Pre-myectomy” education discussion group. This discussion group is for those preparing for a myectomy. Click on our event calendar for exact dates and times to register for our "Pre-myectomy" online education discussion group. Our free online discussion groups are open to all.

More about Sabrina - Click Here

I am a health educator specializing in women's health, currently working as a pregnancy expert at Pregistry.com. 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 mom (the last two just turned 18) and a 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 9 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 almost 4 years later I have very few symptoms.

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

Karen Klimczak

Meet online discussion group host, Karen Klimczak. Karen co-hosts our "Transplant Pathway" monthly discussion group along with Amy Mann. Click on our event calendar for exact dates and times to register for this online discussion group. Our free online discussion groups are open to all.

More about Karen - Click Here

I was diagnosed with HCM at 27 years old, with no family history and 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.
With the incredible support of the HCMA and an amazing healthcare team/Center of Excellence, I received an ICD and learned that ventricular arrhythmias from HCM were causing these episodes. Having survived many life-saving ICD shocks and proactive care, I’ve been living fully- having a career as a Registered Dietitian, lots of travel, enjoying a wonderful marriage and becoming a mom to a fascinating daughter (now 6).
I am incredibly grateful to have received a life-giving heart transplant on NYE 2020. As a support group co-leader, I hope 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.

Linda Montgomery

Meet online discussion group leader Linda Montgomery. Linda hosts our "Newly Diagnosed" education groups. These free, online education sessions are ideal for those who have been newly diagnosed (within the past two years) or for those who are new to the HCMA. Linda offers several dates & times each month to make it convenient for all to attend.

More about Linda - Click Here

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.

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.

Patient Stories

Armonnie (Monnie) Hawkins

Nadia Morgan

Kay Julius

Jillian Blair

Amy Lenhart

Mike Papale

Kelly Sidebottom

Willie McLaughlin

Karen Newstrom

Vi Tang

Adam Wodon

Brian Blakely

Debbie Hamilton

John Orlando

Missy Hall Nicholson

Christine Callans

Lisa Vecchione

Elizabeth Wessman

Raimone Roberts

Victoria Karl

Joseph Caruso

Thomas Forsyth

Paige Priester

Deborah Capiro

Derek Armstead

Julia Mosher

Deric Wormley

Lisa Salberg

Scott Popjes

Anthony Hernandez

Heather Wartenberg

Dennis Passis

Marla Kennedy

Anna Jeffries

Maya Warren

Rush Roberts

Cole Mitchell

Priscilla Williams

Michael Duddy

Claude Brady

Lauren Donoghue-Cinelli

Michael Sinclair

Collin Dolder

Victoria Collins

Marlin Colon

Marsha Rosenberg

Kent Sperry

Ashley Fisher

Sam Morris

Bill Rossi

Lynda Neuhausen

Caleb LeBlanc

Tracy Argandona

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Would you be interested in sharing your journey living with HCM? Please provide your contact information and our staff will reach out to you for specifics and obtain an information release to share your story.

If you would like to make a donation to the HCMA in honor of an HCM Warrior. We welcome your support in their memory.

Memorial Donation

HCM - THE DISEASE

portrait of a little boy being checked by a doctor using a stethoscope

FINDING CARE

I am not only the CEO... I am a patient

Meet our HCMA Ambassadors

Gwen Mayes

Lekeshia Henderson

Maier Bianchi

Breanna (Bre) Restorick

Joey Ulery Graham

Bill Rossi

Lauren Donoghue-Cinelli

Reinhard (Fritz) Kirchhof

Alison Conklin

Karen Klimczak

Susan Shapiro

Mary Ann Daniel

Meet our HCMA

Online Discussion Group Leaders

SYDELLE ZINN

Bob Eldridge

LISA SALBERG

GWEN mAYES

Debra Rafson

Amy Mann

PAUL PERLMAN

Karen Newstrom

greg levalley

lynda neuhausen

trudy tynan

Sabrina Cuddy

Karen Klimczak

Linda Montgomery

Patient Stories

HCM - THE DISEASE

FINDING CARE

EDUCATION & SUPPORT

ADVOCACY