Archive for the ‘Awareness’ Category

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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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Presentation & Round Table Discussion with children with EDS

Posted on September 21, 2016

Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder! We met children with Ehlers-Danlos-Syndrome to hear their stories. Members of the EDS Chicago Support and Awareness group presented […]

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Ehlers-Danlos and Chiari at the Olympics in RIO

Posted on August 29, 2016

By RDR Staff  . . .  Allysa is known for her competitiveness, determination and breaking barriers mindset. In 2015, she became the paratriathlete world champion, now she will be heading to Rio for the 2016 Paralympics to try and further her success as a paratriathlete. . . . . Diagnosis   In 2010, Allysa was diagnosed […]

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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 Will Not Keep Him From Trying to Win The Voice

Posted on July 25, 2016

by Beatrice Credi “I would love to have seen the joy in your heart and have seen the hope of the first time in your eyes.” These sweet words were written by Benjamin Arasl, an adolescent in France who, through his song, tells the story of the love that he hoped to be able to […]

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“Every day I wake up is a blessing” … despite Ehlers-Danlos Syndrome

Posted on July 4, 2016

By Richard Salit, Journal Staff Writer. Ellen Lenox Smith’s recurring injuries and ailments were as baffling as they were disabling. Some doctors thought they might even be psychological. Why was she always in such pain? Why did she have difficulty swallowing? Why did she keep tearing cartilage and ligaments in her knees and shoulders? And […]

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Fairfield Senior with EDS Takes Her Graduation Walk

Posted on June 11, 2016

By Michael D. Pitman Staff Writer   Elizabeth Schulze worked for years to be able to garner the strength and stamina to walk across the stage and receive her high school diploma. While the act is easy for most high school seniors, it was not for Schulze. Amy Schulze said her daughter, who plans to attend […]

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Free Webinar — “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients – Recording Available

Posted on June 7, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com    TOPIC: “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients PRESENTER: Diane O’Leary, PhD   Dr. O’Leary is currently an Associate Adjunct Professor in philosophy at University of Maryland University College Click IMAGE for the recording of this presentation. Click here for the […]

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