Archive for the ‘Community’ Category

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Bethany Puts Aside Ehlers-Danlos to Help Others This Christmas

Posted on December 3, 2013

 Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]

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Katie – “When I reached 16 I Had Dislocated My Hips about 50 Times from EDS”

Posted on December 1, 2013

Katie Vale has finally discovered some methods to help her manage her Ehlers-Danlos Syndrome symptoms.  By: Lucy Benyon Published: Sun, December 15, 2013 “Katie Vale was diagnosed with Ehlers- Danlos disease which causes regular injuries [PH] Katie, 34, lives in Essex in the UK. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her […]

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Watch Ehlers-Danlos episode on “Good Morning America” – Video Link

Posted on November 29, 2013

“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to  Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse.  Their daughter has been diagnosed with Ehlers-Danlos Syndrome. Click here for this story  about the Huber family’s false allegations […]

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EDS Awareness Speaker Series – The Evolution of Genetic Diagnosis – Recording Available

Posted on November 27, 2013

EDS Awareness invites you to watch this FREE webinar recording! Our presenter for November 20th was  Stephanie Gandomi, MS, CGC, LGC She is a Licensed Genetic Counselor Her topic was: “The Evolution of Genetic Diagnosis and Why This Matters In Patient Care!” The recording of this presentation is now available at the following link:  Click here to […]

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Ayiana Lives With the Constant Pain That She Endures Each Day

Posted on November 26, 2013

This courageous young lady has a faith in God that helps her manage her pain from Ehlers-Danlos Syndrome. By: Daniel Elizondo Silsbee, TX Living life as a vibrant 14-year old teen is the epitome of life. Football games, birthday parties, hanging out with friends. It’s that age when you are on the brink of maturing […]

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TV News Report: Ehlers-Danlos Leads to Bogus Child Abuse Allegations – Watch Videos

Posted on November 17, 2013

All charges were finally dismissed after false child abuse allegations kept Andrew Huber separated from his daughter for nine months. She has been diagnosed with EDS. Watch the videos below to hear about the family’s ordeal.  Similar articles appeared on Yahoo Shine and in the news. Watch them on the  Katie Couric Show  which aired on […]

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EDS Awareness Speaker Series – Alberto Friedmann – Recording

Posted on November 5, 2013

  We had a special event for our EDS Speaker Series session on November 4, 2013. Our EDS Partners at Arming Champions (Allen and Carolyn Fisher) conducted an interview with Alberto Friedmanncall for them who is a Martial Arts Master with Ehlers-Danlos Syndrome. He also teaches martial arts and self-defense to children and adults with special needs. You can listen […]

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Discovery Health Channel: Ehlers-Danlos Syndrome

Posted on November 1, 2013

Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face.  It addresses EDS Hypermobility and Vascular types.

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