Archive for the ‘Fundraising’ Category

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Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Posted on August 10, 2015

This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]

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Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome

Posted on July 31, 2015

By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome.  His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening.  Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]

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Trevor will be Riding 100 miles to Raise Cash for Hypermobility Association

Posted on July 1, 2015

Trevor Sleeman will be riding his bicycle to raise awareness and funds for the Hypermobility Association. [Halstead Gazette] Trevor will take part in a 100-mile bike ride to raise money for people with a painful medical condition after his wife was diagnosed with it. Trevor Sleeman (pictured), 49, will take part in the Prudential 100 bike […]

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UK woman speaks out about her Ehlers-Danlos Syndrome

Posted on July 1, 2015

Natasha is struggling with walking and needs funding for a wheelchair to cope with her Ehlers-Danlos Syndrome. She helps raise awareness by working for EDS Support UK. Published by: Stephanie Price    A MELIDEN woman who suffers with a rare condition wants to raise awareness as well as raise money to fund an electric wheel chair. Natasha Evans, […]

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Soccer Club Supports Teammate With Ehlers-Danlos Syndrome

Posted on June 15, 2015

Watch this TV news video about Madison whose soccer team helps raise awareness for Ehlers-Danlos Syndrome and funds for Cincinnati Children’s Hospital. The SouthStars Soccer Club Team Lightning hosted a bowl-a-thon at Poelking Lanes South in honor of Madison.

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EDS – Chiari Walk & Run in Milford, CT

Posted on May 21, 2015

EDS – Chiari Walks are being planned for EDS Awareness. Here is a well-organized walk that received newspaper coverage in Milford, CT. Jackie Stager is a smart, talented, and spirited young teenager with plenty of dreams, hopes, and aspirations just like any other 14-year-old.

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McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome

Posted on May 15, 2015

These very talented students are providing awareness for a child with Ehlers-Danlos Syndrome. McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert benefiting a Woodlands-area family in need.

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New Program for Vascular Ehlers-Danlos Syndrome

Posted on May 10, 2015

Vascular Ehlers-Danlos Syndrome is the most devastating type of EDS. It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. The DEFY Foundation was started by two students at West Chester University.

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