Ehlers Danlos in New York
Somehow saying “Happy Rare Disease Day” doesn’t quite have a ring to it, does it?
Thanks to IOWA STATE UNIVERSITY for this great piece on a student with hEDS. A good one to share with friends, colleagues and family to bring some light to what we EDSers go through every day — not just on Rare Disease Day. If only!
Anonymous donor presents $1 million gift to The Ehlers-Danlos Society to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS).
The Ehlers-Danlos Society has announced the largest single donation in its 33-year history to establish an international research network of leading physicians, geneticists, and other health professionals devoted to finding the underlying genetic markers for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). The anonymous gift of $1 million dollars, represents the largest individual gift in the history of hypermobile EDS research.
“Because hypermobile Ehlers-Danlos lacks a known genetic cause, this truly has the potential to be a transformational gift,” states Lara Bloom, International Executive Director of The Ehlers-Danlos Society, a global leader in Ehlers-Danlos research, collaboration, and support.
“Through our donor’s extraordinary generosity, we are finally able to launch a virtual ‘moonshot’ in the advancement of our understanding into the most prevalent—and often most vexing—form of the Ehlers-Danlos syndromes,” declares Bloom.
“Although our 29-year-old daughter has remarkable coping ability and good medical support, she is in constant pain. She also has fatigue, nausea, sleep disturbance, and anxiety. Everything she does or plans is affected by this condition,” emphasizes the donor.
“No others in our family have hEDS or HSD that we know, but I feel as if we all have it, because we think of her every day. At the same time, as I’ve learned about hEDS and HSD, I’ve become concerned not only about our own daughter, but also for the many people suffering from these problems around the world. The severity and prevalence of these syndromes is greatly underappreciated. It is possible that hEDS and HSD are a collection of distinct and different genetic syndromes with similar manifestations. If so, it’s important we understand this so we can pursue the appropriate research for each condition and make the best recommendations about family planning,” continues the donor.
Visit www.ehlers-danlos.com for more information.
The download link works.
Download link:
Shane Robinson video
[S3_embed_video file=’shane.flv’]
Shane Robinson video
Thursday, December 12, at 7:00PM, Shane Robinson, Executive Director of the Ehlers Danlos National Foundation, will join us for our December meeting. He brings news of:
This promises to be one of the most informative meetings concerning a broad range of policy and activities on a national scale. Please join us to learn about the dramatic efforts currently taking place around the country.
All are welcome, especially those who are not yet diagnosed but have questions. We will also conduct other normal meeting business.
Directions:
The meeting is at the 92nd Street Y. 1395 Lexington is between 91st and 92nd streets. For transportation information, the number 6 local subway stops at 96th St. and the 4 & 5 line stops at 86th St.
Mark your calendar
This event is another in our continuing effort to provide useful information and events to support the EDS community in NYC and improve the quality of life for our members. I hope you can join us Thursday, December 12th, 7PM at the 92nd St. Y.
eds-nyc.com
