Archive for the ‘Community’ Category
Posted on January 2, 2016
Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile run/walk/roll, a 5K run/walk and a ½ marathon run happening on August 6, 2016 in King Ferry, NY. . . This is a noncompetitive Run/Walk/Roll event that serves to raise donations and awareness for Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. All proceeds will […]
Posted on December 1, 2015
After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – WKTV.com UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]
Posted on November 23, 2015
by Seema Hakim. Lucy Watts is given special recognition for her social media work to promote EDS awareness. A young woman battling a life-limiting illness was made an MBE (Member of the Most Excellent Order of the British Empire) for her tireless work in educating others about the condition. Lucy Watts, of Swans Green Close, Benfleet, […]
Posted on November 2, 2015
Canadians with Ehlers-Danlos Syndrome are desperate for treatment and continue to advocate change in their health care system. MPP Michael Harris is calling for an all-party committee to form a comprehensive strategy on rare diseases. Patients like the Smith siblings are skeptical, but remain hopeful and thankful for community fundraising. By Darcy Cheek, Recorder and Times. You won’t find […]
Posted on November 2, 2015
By: Clair Morton. – Libby Nash, a physiotherapist in Australia, has been nominated by her patient for an award. She is dedicated to helping teen Lily Warren strengthen her joints affected by Ehlers-Danlos Syndrome. GRAFTON physiotherapist Libby Nash has gone above and beyond to improve the life of teenager Lily Warren, who lives with a rare and debilitating […]
Posted on October 2, 2015
This is an encouraging story about a task force being created in Connecticut to address the issues for those with rare diseases like EDS.
Posted on October 1, 2015
Wellapalooza and the EDS Ride for a Cause. – Our speakers for Wellapaloooza on Saturday, November 14th, 2015 are: 1. Dr. Theoharides themastcellmaster.com 2. Dr. Telair (a naturopath who’s been working with Dr. Francomano) 3. Dr. Pocinki _ – The 2nd Annual EDS Ride for a Cause on Sunday, November 15th, 2015 will benefit EDS […]
Posted on October 1, 2015
Canadians with EDS have not been receiving the treatment they need. Families who have traveled to the U.S. for EDS treatment are seeking reimbursement from the Ontario Health Insurance Plan. Watch the video press conference and interviews with the affected EDS families.
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