Ehlers-Danlos National Foundation Announces New Leadership

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EDNF Installs 2014-2015 Board of Directors

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I am excited to work with such a talented and committed group of professionals to accomplish our goals this year.

The Ehlers-Danlos National Foundation (EDNF) is pleased to announce its 2014-2015 Board of Directors. Sandra Aiken Chack will serve as chair. The board was voted upon earlier this month at the EDNF 2014 Annual Learning Conference in Houston, Texas July 10-12.

“The Ehlers-Danlos National Foundation has an ambitious agenda ahead of us. From the rollout of the first EDNF Center for Clinical Care & Research at the Greater Baltimore Medical Center to our September physicians conference to a series of educational webinars EDNF will launch this fall, we are leading the search for knowledge about Ehlers-Danlos Syndrome and building a community of people who work together to effect change,” said Chack. “I am excited to work with such a talented and committed group of professionals to accomplish our goals this year.”

Serving as vice chair is Susan Hawkins. The secretary is Richie Taffet, MPH, and the treasurer is Richard Malenfant, MBA, MPH. Members continuing as directors are Heidi Collins, MD; Clair Francomano, MD; Judge Richard P. Goldenhersh; Linda Neumann-Potash, RN, MN, CBN; and John Zonarich, Esq.

EDNF welcomes new directors, Fraser C. Henderson, Sr., MD; and Jane Mitakides.

EDNF formally thanks outgoing members Elliot Clark and Deb Makowski. Clark is Chair Emeritus and was an integral part of enendering the EDNF Center for Clinical Care & Research at Greater Baltimore Medical Center (GBMC), which will hold its ribbon cutting ceremony on August 16th.

About Ehlers-Danlos National Foundation (EDNF): EDNF is the leading authority for Ehlers-Danlos Syndrome (EDS), a group of genetic connective tissue disorders. To support research and education about EDS to prevent disfigurement, crippling, and premature death through early and accurate diagnosis, EDNF increases awareness about EDS by fostering and funding research, generating and distributing accurate and responsible information, and delivering recommendations for those seeking diagnosis of problems that have been a life-long mystery. EDNF also provides support to those who have been diagnosed with EDS by offering information and emotional validation for the newly diagnosed wrestling with what a genetic disorder means for them and their families, and provides tips for those who have lived with EDS for years, including day-to-day inspiration and news. EDNF’s members are physicians and other medical practitioners, researchers, people with EDS, and friends. For more information, visit

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Diana Cummins
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