Archive for the ‘Fundraising’ Category

Dayton Zebras Conquer Ehlers-Danlos, Chiari Walk Across America 5K

Posted on October 1, 2016

        On September 17, 2016 the Dayton Zebras participated in the Conquer Chiari Walk Across America 5K in Beavercreek, OH. This year the Dayton Zebras set up a selfie booth and EDS awareness table. We reached many people that had never heard of EDS. We were also able to reach people that did […]

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Successful Ehlers-Danlos Hoofbeat Run Walk-N-Roll in King Ferry, NY.

Posted on August 13, 2016

Staff writer Gwendolyn Craig Thank you to all who participated in, volunteered at and donated to the Ehlers-Danlos Hoofbeat Run Walk-N-Roll on August 6th. KING FERRY — Elizabeth Shaw loves to swim, bike and practice CrossFit. She has cycled around every Finger Lake, and for about three years, she has been a local personal trainer, helping […]

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Ehlers-Danlos Hoofbeat Run Walk-N-Roll – August 6, 2016

Posted on January 2, 2016

  Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile run/walk/roll, a 5K run/walk and a ½ marathon run happening on August 6, 2016 in King Ferry, NY.  . . This is a noncompetitive Run/Walk/Roll event that serves to raise donations and awareness for Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. All proceeds will […]

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The Reality of Ehlers-Danlos Syndrome

Posted on December 1, 2015

After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]

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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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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

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