Segal Foundation commits $6.7M to advance EDS research

Pledge includes gifts to further efforts and initiatives of Ehlers-Danlos Society

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by Mary Chapman |

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As part of its commitment to support rare disease research, the Mike and Sofia Segal Foundation has pledged $6.7 million to The Ehlers-Danlos Society to advance scientific research in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD).

The “transformative” commitment includes a number of gifts to further and accelerate the organization’s research initiatives. Specifically, the donations are expected to drive innovation into underlying EDS and HSD mechanisms, help identify new treatment strategies, and improve patients’ quality of life.

“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,” Mike Segal said in a press release. “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.”

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‘Shaping’ a new future for EDS

EDS is a group of genetic conditions that affect the connective tissues that give structure to joints, blood vessels, skin, and other tissues and organs. It is typically characterized by abnormally mobile joints and soft, stretchy skin. Complications from it can include skin fragility, frequent bruising and poor healing, joint dislocations, pain, as well as eye and dental issues. In some rare EDS types, some complications, such as organ and blood vessel rupture, heart valve disease, and aneurysms, or bulges in weakened areas of blood vessels, may be life-threatening.

HSD is diagnosed when patients have joint hypermobility, but don’t fulfill all hypermobile EDS criteria.

According to the society, the foundation’s gifts are aimed at “shaping a future” where people with EDS and HSD can thrive. The hope is that the investment will inspire collaborations and financial contributions from others.

“This marks a turning point for both the Ehlers-Danlos Society and the EDS and HSD community,” said Lara Bloom, the organization’s president and CEO. “The support from the Mike and Sofia Segal Foundation is invaluable in propelling our research toward 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.”

Mike Segal, who came to the U.S. in 1978 from what is now Ukraine, achieved success in the energy sector. The foundation was established to champion causes that included rare disease research, through nonprofit organizations. In addition to funding research, The Ehlers-Danlos Society provides support services, educates healthcare professionals, and seeks to increase care access.