About the Foundation

History of the Ehlers-Danlos Syndrome Research Foundation

The Ehlers-Danlos Syndrome Research Foundation (EDSRF) was founded in January 2020 by Jennifer Berman, JD, MBA and Alissa Zingman, MD. Our founders first met as doctor and patient at Dr. Zingman’s P.R.I.S.M. Spine and Joint clinic in Silver Spring, MD. It was during this visit that Dr. Zingman diagnosed Ms. Berman’s Ehlers-Danlos Syndrome (EDS). A strong friendship was born through their shared experience of the decades long search for answers to their medical complexities. From this friendship, grew a desire to help others in the EDS community through a large and impactful approach. Over lunch one afternoon, they decided to join their respective legal and medical expertise together to create the EDSRF. Their goal was to fund the types of medical research projects that would quickly change healthcare policy, educate healthcare professionals, and ultimately provide better healthcare outcomes for the many people living with EDS, HSD, and related conditions.

About the Organization

The EDSRF is a nimble 501(c)(3) non-profit organization run by two part-time employees and many volunteers. Our volunteers include patients, family members, friends, physicians, researchers, and other health professionals. The Foundation has a Board of Directors and a Medical Advisory Board. The Foundation’s main office is in Maryland and has volunteers across the US. Our Foundation’s primary focus is on EDS research and provider education.

About the Ehlers-Danlos Syndromes

The Ehlers-Danlos Syndromes are a collection of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. Connective tissue is found throughout the human body and can affect every organ or system. Dr. Zingman likes to say, “EDS is not rare, but it is rarely diagnosed.” People with EDS have symptoms that can include joint hypermobility, skin hyperextensibility, tissue fragility and pain. There are currently 13 types of EDS; and each subtype has a different set of clinical criteria for diagnosis. Most medical schools spend an hour or less discussing EDS in academic curriculum.

Program Initiatives and Fundraising

EDSRF supports research to improve diagnostic or therapeutic care for people with EDS, HSD and related disorders. We prioritize research studies whose findings are most likely to inform the decisions made by patients, clinicians, and other stakeholders in the healthcare delivery system. We are especially interested in funding proposals for new investigators and pilot studies to advance the next generation of EDS researchers.

The EDSRF provides grant awards to researchers to support EDS medical projects, primarily in the US. The Foundation’s medical board includes leading global EDS experts in their respective specialties, including genetics, immunology, neurology, neurosurgery, orthopedic and preventive medicine. The Foundation funds research projects and awards external grants through a twice annual call for proposal process. The EDSRF supports these research projects by fundraising initiatives. In 2023, the Foundation is launching an outreach webinar series to help disseminate specialty-focused content by EDS healthcare experts to the patient community and healthcare workers. The goal of the webinar series is to provide information while raising the awareness of the Foundation, ideally resulting in more donations.

Medical Board

Alissa Zingman, MD, MPH

Musculoskeletal/Orthopaedic
Committee Chair

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Clair Francomano, MD

Genetics
Committee Chair

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Fraser Henderson, MD

Neurological Surgery
Committee Chair

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Anne Maitland, MD, PhD

Mast Cell/Immunological
Committee Chair

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Ilene Ruhoy, MD, PhD

Dysautonomia/Neurological Manifestations
Committee Chair

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