Archive for the ‘Community’ 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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It was Life Changing for Theresa to Find Out About Her Ehlers-Danlos

Posted on October 11, 2013

Three weeks ago Theresa  was finally diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that affects her joints.  She finally found a name for the pain! HANOVER — Several months ago, Theresa Selfe decided to take a walk, not realizing how much she would regret it. She sat down for a while after returning home and when […]

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Doctor Speaker Series: Dr. Diana Driscoll

Posted on October 2, 2013

EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. The sessions will be the 1st and 3rd Wednesdays of each month at 9:00 pm EST. Please note: We are limited in the number of openings so please log-in early  to attend the program.  We will provide a link to click on to join the meeting, […]

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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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Joanne Has Rare and Life-limiting Condition: Vascular Ehlers-Danlos

Posted on September 28, 2013

Joanne gets alot of support from her friends and family while struggling with Vascular Ehlers-Danlos. “Joanne Teague was an apparently healthy mother of three young children  when she had a heart attack at home one evening. The 39-year-old  occupational therapist had just put children Pete, then two, Alice, three and Will, seven, to bed and […]

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