Archive for the ‘Fundraising’ Category

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Starlight Foundation Grants Wish For EDS Boy

Posted on September 20, 2013

An eight-year-old EDS boy’s dream of driving a Lamborghini has come true thanks to the Starlight Children’s Foundation. “Cameron Jones suffers from a complex form of the genetic disorder called Ehlers Danlos Syndrome, where collagen fails to form properly in the body that affects the skin, ligaments, and internal organs. Despite spending a lot of time in […]

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National Champion Figure Skater John Coughlin is an Ehlers Danlos Syndrome Supporter

Posted on September 15, 2013

John’s mother struggled with pain and was finally diagnosed with Ehlers-Danlos Syndrome. The Ehlers-Danlos National Foundation (EDNF) is pleased to announce that U.S. pairs figure skater John Coughlin has become a public supporter of the organization. Coughlin lost his mother to Ehlers-Danlos Syndrome (EDS) in 2010, and he is committed to raising awareness and increasing support for […]

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EDS Support Group in Lancaster

Posted on June 10, 2013

This EDS Support Group  is promoting EDS Awareness in Lancaster. By EMILY PEIFFER   Staff Writer        epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at  Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic  disorder, are now at the checkout counters of four local Turkey Hill  markets. The driving force behind […]

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Hannah’s Cartoons Improve Communication

Posted on May 18, 2013

Hannah spreads EDS awareness through her creative cartoons. Her Stickman booklets and information cards have enlightened and entertained many readers. They have provided an alternative way for EDSers to express their needs. “Hannah was diagnosed with HMS aged 24, having been symptomatic all her life. She did well in school and university, but a year […]

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