ABOUT the hcma:

THE MISSON OF THE HCMA

THE VISION OF THE HCMA

THE OBJECTIVES OF THE HCMA

Educate about the symptoms and treatment options for patients, their families and their medical providers.

Advocate for policy/ legislation that improves disease detection, healthcare access, matters of importance to the community.

Develop and maintain a network of support for individuals with HCM and their families.

Increase accessibility to specialized healthcare professionals providing evidence-based treatment of HCM.

Promote and publish research of HCM and broaden access to results with the ultimate goal of eradicating the disease.

Partner with complementary organizations that will help further the mission of the education about, and management of the disease.

Generate appropriate funding for a sustainable organization and ongoing patient and physician engagement.

The HCMA was founded in 1996 as a 501c3 nonprofit organization. We provide support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy while supporting research and fostering the development of treatments.

We support the creation of high volume Center of Excellence care models to ensure all needs of the HCM patient community are met at the highest possible level. We believe in improving global awareness of the risks of this genetic heart disease and ensuring disease understanding, its complete natural history, and treatments are improved until the ultimate eradication of the disease itself.

MEET THE FOUNDEr

Lisa Salberg, Founder, and CEO of the HCMA, began on the journey to educate, advocate, and support other patients based on her experience with HCM. This included medical errors that nearly cost her life, the death of her sister - also due to medical errors- and the diagnosis of several family members.

Lisa has published three books on HCM (available on this site) and several peer-reviewed journal articles spoken internationally on HCM. She has appeared in TV and print interviews advocating for patients' rights, research, and raising awareness of HCM.

BOARD OF DIRECTORS

Susan Blakey

BOARD DIRECTOR

Susan Blakey comes to us with 16 years of IT experience designing and maintaining systems predominantly in the supply-chain management and the financial industries. Her organizational skills, attention to detail, and her ability to solve "what if" scenarios before they happen are skills that have helped her and her team be successful in implementing large-scale systems in complex, dynamic environments. Susan has board experience where she was responsible for standardizing corporate policies and upgrading key financial systems. Susan became active with HCMA in 2008 after the death of her husband from HCM. She now lives on Mercer Island, WA She has three children and a Bernese Mountain Dog.

Billur Dowse

BOARD DIRECTOR

Gordon A.Fox, PhD

BOARD DIRECTOR

Dr. Gordon A.Fox, Ph.D. has a long list of work experience in the field of biology with his most recent position as biology professor at the University of New Mexico. He remains active in research in his field, continues to publish papers and books, and serves on the editorial boards of two journals.

Gordon has been a long-time discussion moderator on the HCMA's Facebook Page. He himself has HCM and has had a myectomy as well as personal experience with a number of procedures and drugs used for HCM. The combination of his biological training as well as his "patient perspective" will certainly make him a valued member of our organization.

Amit Kalia, MD

BOARD DIRECTOR

Amit Kalia, MD has been a member of the Board of Directors since January 2006. He is proud to take on a bigger role to help the HCMA continue its mission to support patients and their families affected by hypertrophic cardiomyopathy as the Chairman of the Board of Directors.

Dr. Kalia's family has been profoundly affected by HCM. When he was 9 years old, his family lost his father. Now, as a father of three, he is hoping to change the effect hypertrophic cardiomyopathy has on families today and in the future.

In 2004, he chose to leave a promising engineering career to pursue medicine. He decided to combine his technical background and desire to make a difference by specializing in minimally-invasive image-guided procedures as an Interventional Radiologist. Dr. Kalia is a former Cleveland Clinic physician now helping to build the Interventional Radiology service at the Miami VA Hospital, with a focus on Interventional Oncology, to serve our veterans.

Robert B. Lorfink

BOARD DIRECTOR

Robert B. Lorfink is global chief financial officer of the DAS Group of Companies (DAS), a division of Omnicom Group Inc., a leading global marketing and corporate communications company.

With more than two decades of extensive experience in both financial and agency management, Lorfink is today responsible for the global financial management of over 200 companies in public relations, healthcare, CRM, events, promotional marketing, branding, research and other specialized marketing communications disciplines. Operating through a combination of networks and regional organizations, DAS serves international, regional, national and local clients through more than 700 offices in 71 countries. Prior to his current role, Lorfink was chief financial officer of the Americas for DA.

Before taking on his roles at Omnicom corporate, Rob was president and chief operating office of Ketchum, a leading DAS public relations agency. Rob joined Ketchum as CFO in 2003 and served in that role for 10 years, a period in which the agency experienced significant organic and acquisitive growth, and rose to become the fourth largest public relations agency in the world. In 2007, Lorfink was the only financial executive named to PRWeek's inaugural "40-Under-40" list, which recognized industry leaders who excelled in innovating, growing existing business and inspiring colleagues.

Lorfink, a graduate of St. Peter's University, began his professional career at Shandwick. There, he was promoted into positions with greater responsibility and upon leaving was CFO, North America.

Since 2015, Rob has served as a member of the Board of Directors of the Hypertrophic Cardiomyopathy Association. In 2017, Rob joined the Board of Regents of St. Peter's University, his alma mater.

Rob and his wife, Maria, a St. Peter's alumnus and English teacher at Union City High School, have two sons, Aedan and John. They reside in Allendale, NJ.

Martin Maron, MD

BOARD DIRECTOR

Dr. Martin Maron is Director of the Hypertrophic Cardiomyopathy Center and Research Institute at Tufts Medical Center and the Chanin T. Mast Hypertrophic Cardiomyopathy Center in Morristown Medical Center. His research interests are the diagnosis and management of hypertrophic cardiomyopathy including the role of cardiovascular magnetic resonance in assessment of patients with HCM and novel drug therapy to modify the disease. Dr. Maron has co-authored over 200 original publications on HCM including in New England Journal of Medicine, Lancet, Circulation and Journal of the American College of Cardiology.

Richard Melia, PHD

BOARD DIRECTOR

Richard P. Melia (Dick) has worked on disability and rehabilitation research, training, and policy for over 50 years. He completed his Federal career as Director, Division of Research Sciences, National Institute on Disability and Rehabilitation Research. Dick's PhD work at UMass Amherst uniquely combined expertise in public administration and public health. His father died of sudden cardiac arrest at age 63, and Dick experienced a life-threatening cardiac event at age 59 that led to a diagnosis of HCM. One of his sons had heart surgery at age 40. Dick lives in Arlington Virginia. He enjoys representing HCMA in the Washington DC area where his Federal experience helps him in his advocacy work.

Lynn Perry

BOARD DIRECTOR

Isaac R. Rodriguez-Chavez, PHD, MS, MHS

BOARD DIRECTOR

Dr. Isaac R. Rodriguez-Chavez is a biomedical leader with expertise in Infectious Diseases, Viral Immunology, Viral Oncology, and Vaccinology. He is a Senior Vice President for Scientific & Clinical Affairs, leading a Global Center of Excellence for Decentralized Clinical Trials, PRA Health Sciences. Past positions in the last 32 years include: FDA, DER Officer for Clinical Research Methodology, Regulatory Compliance and Policy Development; CEO/Founder, 4Biosolutions Biomedical Consulting Firm; Vice President, Research, Texas Biomedical Research Institute; Director of HIV Clinical Research Programs, NIH; Senior Clinical Scientist, Schering Plough Corp.; Scientist, Columbia University; Scientist, Polar Biotechnology Company and Venezuelan Institute for Scientific Research (IVIC). He has a PhD in Virology and Immunology; a MS in Microbiology; a MHS in Clinical Research; and a B.S. in Biology.

LinkedIn: https://www.linkedin.com/in/isaacrc/

Adam Salberg

BOARD DIRECTOR

Adam Salberg was previous Vice President of the HCMA and he is the husband of Lisa Salberg. He has been in sales management since 1999 and is currently the Sales Manager for Coverall North America. He has participated in a supportive role with the formation and expansion of the HCMA since its founding in 1996 and has participated in many HCMA fundraising and educational events as well as board member summits.
Goal: To support Lisa, our Board, the medical community and members in furthering the mission of the HCMA.

Stephen Winters, MD

BOARD DIRECTOR

Stephen Winters was born in New York City and grew up in the Bronx. HE attended De Witt Clinton High School and graduated cum laude from New York University in 1975. He completed medical studies at the Mount Sinai School of Medicine in 1979. He completed a lengthy training in internal medicine as well as cardiovascular medicine in 1982. After an additional year as the chief medical resident at Mount Sinai Hospital, under Dr. Richard Gorlin, he completed formal training in cardiac electrophysiology and pacing there in 1996. He was a full-time faculty member at the Mount Sinai Hospital and associate director of the cardiac electrophysiology program, as well as director of the Arrhythmia Clinic there until 1991. Since 1991, he has been director of the cardiac rhythm management program at Morristown Medical Center, in Morristown, New Jersey.

He was a former President/Governor of the New Jersey Chapter and the Board of Governors of the American College of Cardiology. He served as a member of the Advisory Committee and the Health Policy Committee of the North American Society of Pacing and Electrophysiology, as well as Co-Chair of the Integrated Health Enterprise Committee of the Heart Rhythm Society and a member of the, Health Information Technology Task Force of the Heart Rhythm Society. He has coauthored more than 150 original publications and research abstracts predominantly dealing with cardiac rhythm disturbances, published in peer review journals. In addition, he has participated in over 85 clinical research trials, largely focused on various aspects of cardiac rhythm management. He has been a coinvestigator on several clinicals and has been a coauthor on numerous reports pertaining to Hypertrophic Cardiomyopathy.

Emeritus Board Members:

STAFF Members & contracted consultants

Sabrina Cuddy

INTAKE COORDINATOR

Sabrina is a health educator in the San Francisco Bay Area with HCM, giving back to the community by talking to those who call the HCMA or participate in our Facebook Group. She also creates educational materials to share with HCM patients and works behind the scenes on HCMA projects.

It took 35 years from her first HCM symptoms until she finally received the correct diagnosis. Within a few months of her diagnosis, she had a myectomy. This experience makes it easy for her to relate to what people who contact the HCMA are going through.

In her non-work life, she is a mom of adult children and a theater costumer who performs onstage sometimes, works backstage a lot, and loves performing at the Dickens Christmas Fair in San Francisco.

LinkedIn Bio: https://www.linkedin.com/in/sabrina-cuddy-15630119/

Julie Russo

Volunteer Coordinator

lindA montgomery

client advocate

Stacey Titus

CENTER OF EXCELLENCE COORDINATOR

Stacey Titus, HCMA Center of Excellence Coordinator has more than 10 years of experience in office /project management before joining the HCMA Team. The HCMA has held a special place in her own enlarged heart for many years as she too has Hypertrophic Cardiomyopathy. Stacey was diagnosed as a child so she has a “long relationship” with HCM. Given her own experience and navigation with HCM, she understands the importance of developing and maintaining quality centers so that all HCM patients and their families can access the best high-volume care possible for them.

In Stacey’s free time she enjoys traveling and concerts/shows with family and friends. Stacey is also an avid bowler, maybe you will see her name listed in a tournament one day.

Stacey is eager to continue working with our established HCMA Recognized Centers of Excellence as well as working to grow and develop new Centers.

Carolyn Willis

Membership Coordinator/Office Manager

Ross Hadley

HCMA PROJECT MANAGER

Ross Hadley, HCMA Project Manager, learned he had unobstructed apical HCM in 2016. Originally diagnosed with Atrial Fibrillation, Ross was referred to the Mayo Clinic in Rochester, Minnesota, where the correct diagnosis was made pre-ablation following a TEE.

He attended an HCMA conference in Boston in 2018, experiencing first-hand the knowledge and support the association offers its members.

Ross is a lifelong learner who has used his people and problem-solving skills in for-profit, nonprofit, and local government organizations. Ross lives in Decorah, Iowa with his wife and his 2 sons who attend Luther College. In his free time he enjoys genetic genealogy and travel.

LinkedIn Bio: https://www.linkedin.com/in/hadleyro/

elena morgan, MS

Assistant Director

Elena Morgan, M.S., has recently joined the HCMA staff. She comes to us with over 15 years of non-profit experience, including working for Girl Scouts for seven years.

Elena lives in New Jersey with her husband and two young daughters.

Elena is dedicated to advocating for people with heart disease. Her oldest daughter has HCM secondary to Noonan Syndrome as well as other heart conditions.

Cody Stubben

Social Media Coordinator

Julie Olsen

Events Coordinator & Fundraising

VOLUNTEERS

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. 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 “Diagnostic Journey” 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.

Terence "Terry" Fague

Meet online discussion group host, Terence “Terry” Fague. Terry 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 Terry’s online discussion groups. Our free online discussion groups are open to all.

More about Terry - Click Here

My name is Terry Fague. I am a man who ignored early warning signs, but was diagnosed with HCM ten years ago, at age 60. I had a septal myectomy at the Cleveland Clinic, and tested positive for a gene that is known to cause the disease. I have three adult children, two of whom have also tested positive for this gene.

For the past 42 years, I have practiced law in Dayton, Ohio. I follow college and pro football, and am an amateur astronomer.

I would like to hear your experiences, and would be available to share mine.

PAUL PERLMAN

Meet online discussion group host, Paul
Perlman. Paul co-hosts a monthly “All Things
Myectomy” Discussion Group. 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 an alternate 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.

ABOUT the hcma:

MEET THE FOUNDEr

BOARD OF DIRECTORS

Susan Blakey

Billur Dowse

Gordon A.Fox, PhD

Amit Kalia, MD

Robert B. Lorfink

Martin Maron, MD

Richard Melia, PHD

Lynn Perry

Isaac R. Rodriguez-Chavez, PHD, MS, MHS

Adam Salberg

Stephen Winters, MD

STAFF Members & contracted consultants

Sabrina Cuddy

Julie Russo

Volunteer Coordinator

lindA montgomery

client advocate

Stacey Titus

Carolyn Willis

Membership Coordinator/Office Manager

Ross Hadley

elena morgan, MS

Cody Stubben

Social Media Coordinator

Julie Olsen

Events Coordinator & Fundraising

VOLUNTEERS

SYDELLE ZINN

Bob Eldridge

LISA SALBERG

GWEN mAYES

Debra Rafson

Terence "Terry" Fague

PAUL PERLMAN

Karen Newstrom

greg levalley

lynda neuhausen

trudy tynan

Sabrina Cuddy

HCM - THE DISEASE

FINDING CARE

EDUCATION & SUPPORT

ADVOCACY