Archive for the ‘Kids with Ehlers-Danlos’ Category

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When is Flexible Too Flexible? Ehlers-Danlos Syndrome!

Posted on April 29, 2014

It is interesting that genetics don’t seem to be consistent in this family. By Jeff Leen, The Washington Post. “Mildred Burke had one of the strongest necks in the world. A champion pro wrestler in the 1930s and the first female athlete to earn $1 million, Burke was only 5 feet 2 inches tall, but […]

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Painting is a Great Therapy for Girl 4 with Ehlers-Danlos Syndrome

Posted on April 25, 2014

Artwork provides some comfort for this 4 year old child with Ehlers-Danlos Syndrome. By Scott Fishman, Forum Publishing Group “Nimue Fong Yee, 4, painted for the first time at Young At Art Museum in Davie during its Valentine’s Day event. The following weekend, her grandmother gave her a canvas and paints — she hasn’t stopped […]

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Evan is a Teen with EDS who “Lives Each day Making a Difference”.

Posted on April 22, 2014

This courageous young man wants to help others with rare and debilitating diseases like his. By Wesley Gardner. “Sitting on the floor of his living room, with family photographs checkering the light yellow walls and Manchester United v. Bayern Munich playing on a muted television behind him, 15-year-old Evan Mundine began to tell his story. He talked […]

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EDS Doctor Speaker Series – Dr. Wilson – RECORDING AVAILABLE

Posted on April 14, 2014

EDS Awareness invites you to watch this FREE webinar recording!   On April 9th, Dr. Golder Wilson spoke about Ehlers-Danlos Spectrum and Dysautonomia.  Click here for Audio Only Recording link Click here for Dr. Wilson’s slides   PRESENTER:   Dr. Golder N. Wilson is a pediatric geneticist   Topic:  Ehlers-Danlos Spectrum and Dysautonomia   INVITE YOUR FRIENDS: Spread the knowledge!  […]

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Teen with Ehlers-Danlos Publishes Book Alongside Loyal Friend

Posted on April 11, 2014

Kylie and Elizabeth’s novel – 5 years in the making – is now published!  It is an imaginary tale written by a pair whose friendship is proven and real. “It takes a very special person to stick with someone who has gone through what Elizabeth has gone through”, says her mom, Amy Schulze (Co-Leader of the Cincinnati EDS Support […]

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“Military Child of the Year” Has Ehlers-Danlos Syndrome

Posted on April 8, 2014

Michael-Logan Jordan is an ambassador for the Arthritis Foundation and president of his own foundation! Reported by Khon2 News. “A Kailua teen will be recognized with a Military Child of the Year Award from Operation Homefront during a special gala next month. The national non-profit organization, which provides emergency assistance to military families, gives the award […]

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Sled Hockey Team Includes Players with Ehlers-Danlos

Posted on April 5, 2014

Pennsylvania athletes with Ehlers-Danlos are hooked on Sled Hockey. The team will travel to Boston to participate in the Disabled Hockey Festival. Teammates enjoy being able to play a sport without having to think about their disability. By Eric F. Epler Don’t let the perfectly-pink color scheme of Anna Lehman’s sled fool you. When the 16-year-old athlete […]

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Honorary Teammate with Ehlers-Danlos Syndrome Joins The University of Dayton Basketball Team

Posted on March 30, 2014

The University of Dayton Flyers have a “good luck charm” on their team.  Trevin Gray is a 14 year old with Ehlers-Danlos Syndrome who has joined the college team through a program called Team IMPACT. Watch the video news report! By WMCTV.com Staff MEMPHIS, TN – (WMC-TV) – The University of Dayton basketball team faced Florida in the […]

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