Fundraising
EDS – Chiari Walk & Run in Milford, CT
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.
McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome
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.
New Program for Vascular Ehlers-Danlos Syndrome
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.
Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome
15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome. When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for a wheelchair-friendly car and home. She is thankful to return to school and hopes to study medicine after graduating. She is passionate about EDS Awareness. By SARAH […]
Single Mom Dealing with Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks. But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life. By: Margaret Burin (ABC […]
Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome
In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT. Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her! By Kathleen Schassler, The […]
10 year old Toby with Ehlers-Danlos Syndrome Regains Independence
The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost. Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome […]
Father-Daughter Dance for Ehlers Danlos Syndrome
Five-year-old Amelia Gibson and her father will be holding a “Father & Daughter Dance” on January 17th to raise awareness and funds for Ehlers Danlos Syndrome. Amelia and her mother are raising EDS Awareness in Indiana hospitals by giving packages containing personal-care items to patients. Amelia and her mother have EDS. Watch the video about their EDS awareness project to help hospital […]
