Archive for the ‘Community’ Category
Posted on May 31, 2015
The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!
Posted on May 21, 2015
EDS – Chiari Walks are being planned for EDS Awareness. Here is a well-organized walk that received newspaper coverage in Milford, CT. Jackie Stager is a smart, talented, and spirited young teenager with plenty of dreams, hopes, and aspirations just like any other 14-year-old.
Posted on May 15, 2015
These very talented students are providing awareness for a child with Ehlers-Danlos Syndrome. McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert benefiting a Woodlands-area family in need.
Posted on May 13, 2015
Little Henry and his family are struggling with Classical Ehlers-Danlos Syndrome. It took a year to be diagnosed. Now that the cause of his symptoms has been identified, his parents can better care for him.
Posted on May 10, 2015
Vascular Ehlers-Danlos Syndrome is the most devastating type of EDS. It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. The DEFY Foundation was started by two students at West Chester University.
Posted on May 1, 2015
Brynn had a long history of adverse reactions to many foods she was eating, but finally determined it was not traditional food allergies! She has found ways to manage her Mast Cell Activation Syndrome – including EpiPens and a service dog. By Kira Peikoff The Symptoms Brynn Duncan was 11 years old when her stomach started to revolt against food. Frequently […]
Posted on April 25, 2015
Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]
Posted on April 12, 2015
NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA). While progress has been made, much still needs to be done. Click here for the original broadcast on NPR radio. Join the efforts to spread awareness of ADA on its July 26th anniversary. Resources include this Tool Kit, a project of the ADA […]
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