Archive for the ‘Fundraising’ Category

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Erika Gets Extreme Makeover to Her Home

Posted on October 22, 2013

Erika Heitman, who has Ehlers-Danlos Syndrome, now has a more accessible home – thanks to the work of the nonprofit organization Welcome Home Angel. By Zach Hanner Breakingnews@StarNewsOnline.com “A crowd of around 40 people gathered at the quaint little cottage on Carolina Beach. They chanted, “Move that lift! Move that lift,” a la “Extreme Makeover: […]

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Nationwide Children’s Hospital Columbus Marathon: Oct. 20, 2013

Posted on October 18, 2013

What an exciting opportunity to promote EDS Awareness with this marathon in Columbus, Ohio! Click here to see Heather at Mile 24 The Nationwide Children’s Hospital Columbus Marathon & ½ Marathon is pleased to announce its field of “Patient Champions” who will represent 24 of the 26.2 miles on this year’s course. Two of the […]

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Ehlers-Danlos Patients Are Represented at Columbus Marathon

Posted on October 17, 2013

Heather represents EDS patients at the Nationwide Children’s Hospital Marathon in Columbus, Ohio on October 20, 2013.   Our Columbus EDS Support Group will join Heather to promote EDS Awareness to the public! Each mile marker features a Children’s Champion, each with a different health condition.  She will be at mile marker 24.   Here is her story: […]

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Canadian medical conference on Ehlers-Danlos Syndrome

Posted on October 13, 2013

Erika helped to coordinate a medical conference on Ehlers-Danlos Syndrome connecting EDS experts with Canadian neurosurgeons, geneticists and pediatricians. On Oct. 12th, experts including Dr. Fraser Henderson spoke to the group. Erika also shared her experiences. By Susan Gamble, Brantford Expositor When Erika Crawford desperately needed a complex operation that was perfected in the U.S. and not covered by OHIP, […]

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“Bethalon Ironman” Raises Funds for Beth’s Ehlers-Danlos Needs

Posted on September 29, 2013

Some staff members of Saundersfoot Community School are running, swimming and cycling  to raise money for an orthopaedic bed for Beth who has Ehlers-Danlos Syndrome “October will be a busier than usual month for some staff members of Saundersfoot Community School. Inspired by the recent Ironman event, a number of ladies at the school will be […]

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Mother and Daughter with Vascular Ehlers-Danos Syndrome

Posted on September 28, 2013

What a beautiful story of mom and daughter as they help one another deal with vascular Ehlers-Danos syndrome (EDS) by Jamie Bullen jbullen@thekmgroup.co.uk “A young mum has told of her heartbreak after she and her only child were diagnosed with an incurable disease which will cut short their lives. Leanne Bell, 26, and five-year-old Alicia discovered on the […]

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Petition in Ireland: Ehlers-Danlos “Treatment Abroad Scheme”

Posted on September 26, 2013

Hello, my name is Jordan Egan, I’m 16 years old and I live in Ireland. I have Ehlers Danlos Syndrome and other associated conditions, Irish EDS patients have no access doctors that are familiar with the condition in Ireland and because of this many people have to travel to London for treatment. The Irish health […]

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Annabelle Has Life-Threatening Vascular Ehlers-Danlos Syndrome (VEDS)

Posted on September 24, 2013

Sixteen-year-old Hannah Alderson is helping to raise funds for Annabelle while promoting  EDS Awareness in the UK “A KIND-HEARTED teenager has completed a 10k run with her mum to raise money for a Bury youngster with an incurable and life-threatening condition. Four-year-old Annabelle Griffin, of Wilby Close, Brandlesholme, suffers from life-threatening Vascular Ehlers-Danlos Syndrome (VEDS) which means […]

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