HCM - Key Persons
Job Titles:
- BOARD DIRECTOR, Board Secretary Expand
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.
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.
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
Job Titles:
- Board Director
- BOARD DIRECTOR Expand
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.
Job Titles:
- Membership Coordinator
- Office Manager
Job Titles:
- BOARD DIRECTOR Expand
- Leader With Expertise in Infectious Diseases
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.
Job Titles:
- BOARD DIRECTOR, Co - Chair Medical Affairs Expand
- Director of the Hypertrophic Cardiomyopathy Center and Research Institute at Tufts Medical Center
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.
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.
Heather Wartenberg had many syncope episodes (fainting/passing out) over the years, starting when she was a teenager. Doctors had always given one explanation or another, but nothing related to her heart. In 1998, at 21 years old, her syncope episodes became more frequent. She attributed it to stress, work, being a single mom and going to school. One morning, when she was clocking into work, she passed out again. She worked at a doctor's office at the time and recalls that she just wanted to keep working, that she needed to make money to support her daughter and herself, but they insisted she go to the emergency room immediately.
At the hospital she was diagnosed with Hypertrophic Cardiomyopathy (HCM) and was told she needed a myectomy (open heart surgery). She was admitted and scheduled for surgery only 2 days after being diagnosed. Heather was terrified, everything was happening so quickly, and her biggest concern was who would take care of her daughter.
Before her diagnosis, Heather had no idea of the possible correlation in her family history of "heart attacks" on her father's side of the family with her own diagnosis of HCM. Her paternal grandmother had died of a "heart attack" in her 60's but there also many more family members that had passed from "heart attacks". Since her diagnosis, her father has also been diagnosed with HCM and she found out that a cousin had also been diagnosed only a couple of years before her own diagnosis.
A year after her myectomy, Heather was still very symptomatic and had many bouts of arrhythmia. She had her first pacemaker/defibrillator implanted in 1999. Over the next several years, her health continued to decline. She battled with arrhythmias ongoing, and her ICD appropriately discharged on more than one occasion. Heather had an Alcohol Septal Ablation to address a residual gradient. She also had a radiofrequency ablation to treat Premature Ventricular Contraction (PVC) and Atrial Fibrillation (A-fib). In 2019 she underwent surgery again to replace her pacemaker/defibrillator and lead extraction from the old device. The surgery took almost 9 hours!
By Fall of 2021, Heather's health had deteriorated to the point where she just couldn't function. Stairs were impossible, even cooking a meal was difficult to manage. Her cardiology team had nothing more to offer to give her the quality of life she needed and deserved. Heather reached out to the Hypertrophic Cardiomyopathy Association (HCMA) and spoke with Lisa Salberg. Lisa put her in contact with the University of Colorado Heart Transplant Center and she was officially listed for a heart transplant on December 30, 2021. Shortly after being listed, Heather received the call that a donor heart was found, and she received a heart transplant on January 8, 2022.
Heather reflects that there are many areas of her life that have been impacted by HCM. Relationships, emotional well-being and work are only just some. "It is hard for those who don't have HCM to understand that we don't feel well even though we look fine. Our activities are limited at times. It's not that we don't want to do it, we just can't do it."
While it is a rough recovery at times, Heather is healing from her transplant. There are doctor's visits, a lot of medications, and having to educate herself and others on what she can and can't do in order to protect this gift she was given. "Outside of being a mother, the most phenomenal experience of my life has been my transplant. Someone else's heart is actually keeping me alive. I'm really, humbly grateful to the gentleman and his family who gave me life again."
According to Heather, "The work of the HCMA changed my life and ultimately saved it. I am very grateful for their support, guidance, resources and the referral to my transplant team. I see all the work they do, and I want to be a part of it by sharing my experience in an effort to help other patients."
**Update: It is with great sadness we add that Heather Wartenberg passed away on August 15, 2023. After transplant, Heather suffered from chronic rejection, which ultimately led to heart failure, her cause of death. She was only 47 when she passed. Heather's Memorial
Job Titles:
- Events Coordinator & Fundraising
Job Titles:
- LEGISLATIVE ADVOCACY / VOLUNTEER COORDINATOR Expand
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.
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.
Job Titles:
- Founder
- BOARD DIRECTOR, Vice Chair Expand / CEO & Founder - See above
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.
Job Titles:
- Physician
- BOARD DIRECTOR Expand
Michael Lynch, MD is a physician with extensive experience in coordination of care for patients with
My name is Oluwademilade Ogunlade, but most people call me Olu. I am a Nigerian-American born and raised in Brooklyn, NY. I hold a Bachelor of Arts in Politics, Economics and Law from SUNY Old Westbury. I am a first-year student at the Thurgood Marshall School of Law at Texas Southern University. In my free time, I enjoy writing, cooking, and reading. Advocacy is essential to me because I see value in fighting for change, so I joined HCMA as a Legislative Intern. I am excited to get to work and look forward to igniting change!
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.
Job Titles:
- Member of the Board of Directors
- BOARD DIRECTOR, Treasurer Expand
- Global Chief Financial Officer of the DAS Group of Companies
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.
Job Titles:
- BOARD DIRECTOR, Chairperson, Legislative Advocacy Committee Expand
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.
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.
Job Titles:
- INTAKE COORDINATOR Expand
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.
Job Titles:
- CENTER of EXCELLENCE COORDINATOR Expand
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.
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.
When he was young, Thomas was a strong athlete, running track and playing football. At 25, he was diagnosed with a heart murmur, but no further treatment was advised and he continued his active lifestyle.
Everything changed when he was diagnosed with hypertrophic cardiomyopathy (HCM) at 53. Thomas struggled with a racing heartbeat and high blood pressure. He recalls going through a myriad of medication treatments in the hopes of reducing his heart rate and blood pressure. For five years medication was controlling his heart rate and blood pressure, then the thickening of his septum increased. He could hardly walk down the street to go to the grocery store After having a meal at a local restaurant, the walk home was almost impossible.
That year, HCMA held their annual conference in Cleveland. During the seminar at the Cleveland Clinic, he would meet who would become his cardiologist and heart surgeon. Learning of how the Clinic was considered a center of excellence for a procedure known as a septal myectomy, he felt truly blessed to be so close to the medical professionals that could help.
Thomas was fortunate to live a few miles from Cleveland Clinic, where he could be seen and treated by some of the most qualified HCM cardiologists in the world. He and his cardiac team decided that he would benefit from a myectomy, an open-heart surgery that removes part of the thickened heart tissue. Post myectomy, he felt like a normal, active person and could climb five flights of stairs with no difficulty.
Thomas' father had been 53 when he passed away from the same heart condition-HCM. When Thomas was younger, he knew his father had a heart condition. Only after he died and his family was going through his records that they read on his death certificate that he had arteriosclerosis caused by cardiac hypertrophy.
Thomas is now in his 60s and says he feels like he's living on borrowed time. Because he is getting older, he is also subject to conditions that affect people of greater ages. Dealing with those on top of HCM has been somewhat difficult, but he is grateful that he can experience life. He treats every day as precious and unpromised and tries to live to the fullest.
Victoria is a 54-year-old woman who lives in Nashville, TN. She was diagnosed with Hypertrophic Cardiomyopathy (HCM) at 16. She was asymptomatic at the time of her diagnosis. Still, because there was an extensive history of HCM on her mother's side of the family, she was recommended to be tested. Her mother, grandmother, uncle, and two of her grandmother's siblings had HCM. Victoria suspects other family members may have also had it but were never officially diagnosed.
Job Titles:
- Heart Collection / HCM Academy