Archive for the ‘Kids with Ehlers-Danlos’ Category

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Father-Daughter Dance for Ehlers Danlos Syndrome

Posted on January 13, 2015

  Five-year-old Amelia Gibson and her father will be holding a “Father & Daughter Dance” on January 17th to raise awareness and funds for Ehlers Danlos Syndrome. Amelia and her mother are raising EDS Awareness in Indiana hospitals by giving packages containing personal-care items to patients. Amelia and her mother have EDS. Watch the video about their EDS awareness project to help hospital […]

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“POTs and EDS” Webinar by Dr. Henry Burkholder – Recording Available

Posted on January 6, 2015

  EDS Awareness invites you to watch this FREE webinar recording!    Sponsored by: www.bodysupportstore.com     Dr. Henry Burkholder  presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a Pediatric Cardiologist and presenter at the 2014 EDNF Conference in Houston, TX.         PRESENTER:  Dr. Henry Burkholder, Pediatric Cardiologist   TOPIC:   Postural Orthostatic […]

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4th Grade Ehlers Danlos Student Receives Statewide Award

Posted on January 5, 2015

Dominic McMinn was chosen for this year’s “Every Student Succeeding” award and scholarship in California. An Ehlers Danlos student in the Accelerated Reading Program, he’s not only excelled academically, but overcome great physical hurdles.  He is also the the youngest award recipient. Congratulations on your accomplishments, Dominic! Submitted to the Appeal-Democrat.   “Dominic was named this year’s Region […]

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8 Year Old Forest Ranger with Ehlers Danlos Syndrome on TV

Posted on December 15, 2014

Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]

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5-year-old NC Boy Avoids Bumps Due to Vascular Ehlers Danlos Syndrome

Posted on November 14, 2014

 This is a very touching story about 5-year-old Matthew’s struggle to understand his Type IV Ehlers Danlos Syndrome. “It’s really sad to say my wife knows more about it than the doctors,” says his father, Joshua, who was diagnosed last year. At 33 years old, he finally discovered the reason for his multiple vascular ruptures. His son is […]

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Maddison Parker Meets with Australia’s Prime Minister to Discuss Ehlers Danlos Syndrome

Posted on October 13, 2014

Maddison is at it again!  This ambitious 11-year-old had a successful meeting with Australia’s Prime Minister! She asked for five minutes and got 30! She feels she got her message across and that it will yield positive results in promoting EDS Awareness and a possible EDS clinic in Australia. PRIME Minister Tony Abbott will fly the flag for Ehlers Danlos […]

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Annabelle’s Family Runs for Vascular Ehlers-Danlos Syndrome Awareness

Posted on August 14, 2014

 Many friends and volunteers made it a special day for Annabelle as she participated in the Manchester UK Color Run.  The Griffin family spearheads ongoing campaigns to fundraise and spread awareness for Vascular Ehlers-Danlos Syndrome in the UK.  COLOURFUL fundraisers painted the town not just red, but every shade possible, when they took part in “the world’s happiest […]

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Maddy Parker is Ehlers Danlos Ambassador and “Child of Courage”

Posted on August 1, 2014

We have been tracking 11-year-old Maddy’s exceptional work as she raises Ehlers Danlos awareness in Australia.  By ELISSA DOHERTY. Maddy Parker runs a campaign to raise awareness for the Ehlers Danlos syndrome that both she and her sister suffer from. SHE’S a cotton wool kid whose joints can dislocate by simply picking up a book, but Maddy […]

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