Lisa's Story

Lisa’s Story – Lisa Salberg, Founder HCMA

The Hypertrophic Cardiomyopathy Association is not just a cause or a hobby for Lisa Salberg, Founder and CEO of HCMA. It’s her life.  Lisa’s grandfather died from sudden cardiac arrest at the age of 43. Her paternal great aunt suffered a massive stroke, secondary to HCM and died at 52. Her uncle died from sudden cardiac arrest at the age of 48. In the spring of 1995, Lisa’s sister, Lori Anne Flanigan-Munson, began to experience congestive heart failure, which was not recognized or treated. In June she suffered cardiac arrest. She died at the age of 36, leaving behind two children ages 10 and 13 who have since been raised by Lisa and her family. Her father, Larry Flanigan, passed away in June 2008 after a life long battle of misdiagnosis and finally proper identification of his HCM. Lisa’s niece, daughter, cousin and other family members also have HCM.

Lisa was diagnosed with HCM at age 12 after a murmur was detected at a school physical. Three weeks after her wedding, at the age of 21, Lisa suffered a stroke secondary to HCM. In 1997, she received her first ICD (implantable cardiac defibrillator), the only true protection against sudden cardiac arrest. She also takes an assortment of cardiac medications to control her HCM.

Professionally, Lisa has been a leader in human resource (HR) management for 17 years. Health insurance, employee benefits, business administration, event planning, employee counseling, analysis and general work flow management were the cornerstone of her career. She was a past President of the North Jersey Personnel Association and involved in many civic events and scholarship programs.

Since Lisa founded HCMA in 1996 as a national resource and support center for families affected by HCM, she simultaneously held a full-time job while managing the organization. Through her tireless efforts to successfully increase membership, awareness and funding for HCMA, in 2005 she left her career in HR to serve the HCMA full time. The HCMA has an active membership of over 5,700 families with HCM and provides information to the world via its website which serves an estimate 200,000 people per year.

Lisa’s accomplishments including acting as course director for the Annual HCMA meeting which includes CME course and patient education for 12 consecutive years, co-authoring, Hypertrophic Cardiomyopathy for Patients, their Families, and Interested Physicians, first and second editions (2001 and 2006); authored articles for publication in medical journals, trade publications and has been interviewed and quoted in hundreds of articles and news pieces in the media including, NBC News, News12 NJ, ESPN – Outside the Lines, Quite Frankly with Steven Smith, Comcast-Real Life with Mary Amoroso, Chicago Tribune, Washington Post, The New York Times, Wall Street Journal, Star Ledger, Star Tribune, Sports Illustrated, Men’s Health, EP Digest, Journal of the American College of Cardiology countless other regional and local newspapers.

Lisa has severed on many panels, councils and represents the HCMA in several coalitions. American College of Cardiology panelist (2007) – ICD Recalls, Food and Drug Administration and Heart Rhythm Society (FDA/HRS) Policy Conference on Device Performance – panelist and task force member (2005), ICD Leads Conference- panelist (2007). Legislative sub-committee of the Sudden Cardiac Arrest Coalition, member of the Genetic Alliance, Sudden Cardiac Arrest Coalition, Personalized Medicine Coalition, National Coalition for Heart and Stroke Research, NHLBI Constituency Group, and American Heart Association Community Strategies Council (North East Region)