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.
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.
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.
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 […]
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, […]
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 […]
This UK mom is now more mobile! After receiving a grant for a scooter, she can now spend more quality time with her kids. By Tom Murphy of the Westmorland Gazette. AN EDEN mum-of-two who suffers from a life-changing syndrome is looking forward to regaining her independence after receiving a £500 grant to pay for a […]
The pressures from the school environment are difficult enough when a student is well. EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers. By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]
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In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”