The Ehlers-Danlos Society Receives $6.7 Million from the Mike and Sofia Segal Foundation to Advance Cutting-Edge Research for Ehlers-Danlos Syndrome

This commitment is part of an ongoing series of major donations the Mike and Sofia Segal Foundation is making in support of rare disease research

NEW YORK, Dec. 20, 2023 /PRNewswire/ -- The Ehlers-Danlos Society, the global non-profit dedicated to advancing and accelerating research in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), today announced it has received a $6.7 million funding commitment from the Mike and Sofia Segal Foundation (the "Foundation") to advance its groundbreaking research initiatives.

This transformative pledge—which includes several gifts by the Foundation—is aimed at shaping a future where individuals living with EDS and HSD can thrive. It will fuel innovative studies into the underlying mechanisms of EDS and HSD, identify novel therapeutic strategies, and enhance quality of life for individuals affected by these complex disorders.

The Ehlers-Danlos syndromes are a group of inherited disorders impacting the body's connective tissues. Among the many complications of EDS, this leads to skin fragility, bruising, and poor healing; joint instability with subluxations, dislocations, injury and pain; other abnormalities of joint structure; abnormalities, of the eyes; dental issues; and, in some of the rarer types, life-threatening complications such as heart valve disease, rupture of organs (e.g., bowel), aneurysm formation, and rupture of major blood vessels.

"This gift to EDS reflects our steadfast commitment to support cutting-edge treatments for, and educate the public about, a range of rare diseases," said Mike Segal. "A new milestone in our Foundation's work to support causes that have been overlooked and underfunded, this gift will help change the lives of those suffering from EDS and HSD. It is also just the beginning. We look forward to exploring similar initiatives focused on other rare diseases and neglected causes as we uphold our Foundation's mission to make the world a better place."  

Lara Bloom, President and CEO of The Ehlers-Danlos Society, emphasized the significance of the generous gifts: "This marks a turning point for both the Ehlers-Danlos Society and the EDS and HSD community. The support from the Mike and Sofia Segal Foundation is invaluable in propelling our research towards earlier diagnosis. The foundations we've laid since our inception in 2016 are now paving the way for substantial advancements and positive changes that lie ahead."

In 1978, Mike and Sofia Segal arrived in the U.S. from present-day Ukraine with $120, a young child, and just two suitcases. In 1990, Mike launched LS Power from humble beginnings, growing it from a tiny start-up into a powerhouse in the energy sector, focused on power generation, electric transmission, and renewable energy infrastructure.

Mike and Sofia created their family foundation to champion neglected causes. Today's funding commitment to EDS is part of a larger series of gifts the Foundation is making in support of rare disease research. In October 2023, the Foundation committed $17 million to the Leukemia & Lymphoma Society to help advance the treatment of chronic myelomonocytic leukemia (CMML), a rare type of blood cancer. And it intends to make additional gifts in the near future.

The partnership between the Ehlers-Danlos Society and the Foundation marks a significant leap forward in the quest for breakthroughs in EDS and HSD research. It will leverage the expertise and dedication of the Ehlers-Danlos Society, a global leader in advocating for those affected by these complex conditions, and the Foundation's unwavering commitment to driving advancements in healthcare. The Ehlers-Danlos Society and the Foundation hope this investment will serve as a catalyst, inspiring related contributions and collaborations within the scientific community and beyond.

About The Ehlers-Danlos Society:

The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The Ehlers-Danlos Society supports the development of effective and equitable EDS and HSD therapies and works collaboratively to improve the lives of individuals affected by EDS and HSD.

In addition to funding groundbreaking research, The Ehlers-Danlos Society is the global organization providing life-changing support services, increasing access to care, and educating health professionals through its award-winning EDS ECHO program, a Project ECHO initiative, and global events program. To learn more about EDS and HSD and to get involved, please visit ehlers-danlos.com

About The Mike and Sofia Segal Foundation:

The Mike and Sofia Segal Foundation provides substantial capital and endowment grants to nonprofits with outstanding leadership that can demonstrate measurable, impactful outcomes in its areas of philanthropic interest.

For media inquiries, interviews, or additional information, please contact:

The Ehlers-Danlos Society
Erin Simons, The Ehlers-Danlos Society
[email protected]

The Mike and Sofia Segal Foundation
Jonathan Chavkin / Hallie Erlich, Prosek Partners
[email protected] / [email protected]

Dr. Misha Galperin, Zandafi Philanthropic Advisors
[email protected] 

SOURCE The Ehlers-Danlos Society

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