Archive for the ‘Fundraising’ Category

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Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome

Posted on March 24, 2015

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 […]

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Single Mom Dealing with Ehlers-Danlos Syndrome

Posted on March 20, 2015

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 […]

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Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome

Posted on February 7, 2015

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 […]

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10 year old Toby with Ehlers-Danlos Syndrome Regains Independence

Posted on January 17, 2015

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 […]

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Father-Daughter Dance for Ehlers Danlos Syndrome

Posted on January 13, 2015

  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 […]

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UK Woman Spreads Awareness of Ehlers-Danlos Syndrome

Posted on December 6, 2014

Ruth Baker is telling her story to increase EDS Awareness in the UK.  She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is so rare that even doctors don’t know what you’re talking about.” Doctors need to understand that EDS is perceived as a rare disorder only because […]

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Firefighters in UK Raise Money for Ehlers Danlos Syndrome

Posted on November 28, 2014

Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]

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T-shirt purchases will help fund EDS Awareness Educational Program

Posted on October 9, 2014

  These T-shirts will support 2 good causes! $10 of every shirt sold will be split between the EDS Awareness Free Webinar program & Dr. Robert Nussbaum’s EDS research at UCSF.   The EDS Awareness funds will be used for webinars and internet hosting fees – so that the webinars continue to be free to all who participate live […]

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