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

Billur Dowse

BOARD DIRECTOR

Billur Dowse is a Board Director at HCMA and an active volunteer. Billur was the Acting Chairperson for the Elizabeth T. McNamee Legislative Advocacy Committee from October 2019 through June 2023. Billur joined HCMA in 2018 as a member and a volunteer.

After her diagnosis with HOCM in 2017, Billur had to retire early after spending a total of 25 years in the healthcare industry. In December 2017, Billur retired from Merck after serving for 15.5 years as the Director of Global Market Access and Pricing. At Merck, Billur held many different levels of responsibilities within access, pricing, and launching of new products globally. Billur was responsible for US and ex-US markets mainly dealing with payers, which included governments, agencies, and insurance companies as well as the development of Patient Assistance Programs for infectious disease products and vaccines. Prior to Merck, Billur was with IMS Health, now IQVIA, and prior to IMS, she was with the University of Pennsylvania Health System for five years working on patient care issues, development of treatment algorithms, and measuring outcomes all based on real-world evidence, as well as obtaining the patient voice through surveys related to their care.

Gordon A.Fox, PhD

BOARD CHAIR, Chairperson, Patient Education Committee

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.

Rosemary Conlon

BOARD DIRECTOR, Chairperson, Legislative Advocacy Committee

Rosemary Conlon started her career as an open-heart surgery recovery room nurse at Mount Sinai Medical Center in NYC. She transitioned to the cardiovascular medical device industry where she worked for 30 years. Rosemary held positions in sales and both sales and corporate account management while earning an MBA.

Rosemary survived Sudden Cardiac Death at the age of 50 in 2005. Both she, her son, and sister now have AICD’s. Two young men, children of Rosemary’s first cousins, died in Ireland from HCM. One prior to Rosemary’s diagnosis and the other after the diagnosis, even though family members in Ireland had been notified with the genetic information. Unfortunately, family members were screened only with an echo. They did not receive genetic testing.

Rosemary was lucky to learn of HCMA from her new COE cardiologist in 2009. HCMA increased her understanding of the disease with their ongoing education to help her extended family. She is forever grateful for Lisa’s tireless efforts to help patients and their families.

These experiences have motivated Rosemary to help raise awareness by volunteering to be a Co-Director of the Legislative Subcommittee and she is eager to support the work of HCMA as a board member.

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, Treasurer

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, Co-Chair Medical Affairs

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.

Kevin J. O’Connor, Esq.

BOARD DIRECTOR

Kevin J. O’Connor, Esq. is a Shareholder and Chair of the Business Litigation practice, as well as Vice Chair of the Labor & Employment practice, at Peckar & Abramson, a national law firm with headquarters in New Jersey.

Kevin is a United States Air Force veteran who served with distinction for six years in the Strategic Air Command and later graduated from law school with honors in 1995, where he served as Editor-in-Chief of the Rutgers Law Review. He went on to develop extensive experience as a trial attorney with a focus on employment disputes, business litigation, and construction law. Kevin has had extensive experience over his career representing physicians and health care providers in a variety of contexts, including initial work defending physicians in medical malpractice claims, and his later emphasis on employment defense work and partnership/corporate disputes. Kevin is certified by the Supreme Court of New Jersey as a Civil Trial Attorney, a distinction that is shared by only a small sliver of New Jersey barred attorneys who demonstrate an expertise in trial work and have extensive trial experience.

Kevin comes from a family with a long-history of HCM. He has struggled with symptoms since his time in the service which were diagnosed as a murmur, and long suspected that he shared the disease that afflicted his mother who underwent a myectomy with Dr. Maron’s team in 2015. Kevin was formally diagnosed with HOCM in 2021 at the age of 55, and underwent a myectomy at Morristown Medical Center in October 2022. Kevin looks forward to giving back to the HCM community in any way he can.

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, Board Secretary

Adam Salberg was previously Vice President of the HCMA. He is the husband of Lisa Salberg. Adam has been in sales management since 1999 and is currently the Sales Director for MedVantage Inc. Adam is also a Council-At-Large and current Council Vice President for Rockaway Township, NJ. as well as former interim Mayor for Rockaway Township in 2018. 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.

Lisa Salberg

BOARD DIRECTOR, Vice Chair

Bill RosSi

BOARD DIRECTOR

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.

MICHAEL LYNCH MD

BOARD DIRECTOR

Michael Lynch, MD has extensive experience in coordination of care for patients with chronic and
complex health care needs. In addition to earlier practice of internal medicine and geriatrics, his most
recent experience was working as a medical leader with nonprofit coordinated care organizations in
Wisconsin and Minnesota helping patients live well with complex chronic health challenges.

Mike was initially diagnosed with non-obstructive HCM in 2012 and became an active member of
HCMA shortly after that, most recently as a member of the Patient Education Committee. He was
fortunate to receive care initially through pioneering HCM expert Barry Maron, MD and the Mayo
Clinic health system.

Mike is excited to support HCMA’s efforts to improve early recognition and care of HCM by primary
care physicians and nurses coordinated with care by centers of excellence. He has an interest in
helping HCM patients and their families deal with the financial and structural coordination challenges
they face every day with HCM. He is also interested in helping HCMA members understand and
navigate the use of new personal, information and therapeutic technologies.

Emeritus Board Members:

Lynn Perry

BOARD DIRECTOR

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.

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/

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Julie Russo

LEGISLATIVE ADVOCACY / VOLUNTEER COORDINATOR

Julie is not an HCM patient, but she has closely witnessed the effects of HCM on a family near and dear to her Heart.

On June 26, 1976, the summer before entering the fourth grade, Julie moved to Rockaway, NJ, with her family. That same day, she met Lisa Salberg (then Flanigan), and a bond (that has never wavered!) had formed.

Over many years, Julie watched with great pride from the sidelines as Lisa devoted her life to helping other families avoid the tragedies her family had endured. In July 2020, Lisa presented an opportunity to get involved and support the HCMA's mission, and Julie was thrilled to join the HCMA team as a Volunteer Coordinator.

Prior to joining the HCMA, Julie spent over 20 years as a Regional Residential Property Manager, overseeing over 2000 units in New Jersey and Pennsylvania. Before then, she spent 13 years traveling the country providing technical support to data networking customers all over the United States for a large corporation.

Julie lives with her husband, son, and stepson in Bethlehem, PA. She has spent most of her life advocating for family members with mental health, spectrum disorders, and cognitive disabilities. Julie is passionate about helping others live their best lives and embraces learning new and innovative ways of assisting others to overcome their challenges.

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

PROJECT MANAGER

Ross Hadley, HCMA Project Manager, learned he had non-obstructed 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. He is the proud owner of a Boston Scientific Vigilant EL DR DF4 ICD.

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

Olivia Esposito

Graphic Designer

josh green

video production consultant

michele Packard-Milam

HCMA International Development

Interns

Nikki Karri

Nikki is a second year medical student at The George Washington University School of Medicine and Health Sciences. She has been an intern with the HCMA since 2018 and has patient care experience from working at a nursing home and hospital throughout her high school and undergraduate years. Nikki is EMT certified, and is a TaeKwonDo Black Belt holder and instructor. Her goal is to become a cardiologist and work with underprivileged and underserved communities in remote areas. On the side, she is currently working on research regarding "Neuropsychological Outcomes in Individuals with Congenital Heart Disease (CHD)" as well as "Patterns of ADHD Medication Prescription in Children with Congenital Heart Disease". She is excited to continue working with the HCMA and helping with its legislative advocacy initiative and supporting various other projects.

ABOUT the hcma:

MEET THE FOUNDEr

BOARD OF DIRECTORS

Billur Dowse

Gordon A.Fox, PhD

Rosemary Conlon

Amit Kalia, MD

Robert B. Lorfink

Martin Maron, MD

Richard Melia, PHD

Kevin J. O’Connor, Esq.

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

Adam Salberg

Lisa Salberg

Bill RosSi

MICHAEL LYNCH MD

Lynn Perry

Stephen Winters, MD

STAFF Members & contracted consultants

Sabrina Cuddy

Julie Russo

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

Olivia Esposito

Graphic Designer

josh green

video production consultant

michele Packard-Milam

HCMA International Development

Interns

Nikki Karri

HCM - THE DISEASE

FINDING CARE

EDUCATION & SUPPORT

ADVOCACY