Archive for the ‘Kids’ Category

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Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

Posted on August 8, 2015

You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card.  Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS.  Her Birthday is August 31st, so get your wishes in the mail!  Address provided below.  __ Watch Jazzy’s story in […]

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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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Shea overcomes Ehlers-Danlos Syndrome in the Pool

Posted on July 4, 2015

9-year-old Shea has discovered that swimming reduces his EDS pain. Aquatic activity is one of the best exercises for those with Ehlers-Danlos Syndrome. Shea Sargent is only 9-years old, but he’s

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Soccer Club Supports Teammate With Ehlers-Danlos Syndrome

Posted on June 15, 2015

Watch this TV news video about Madison whose soccer team helps raise awareness for Ehlers-Danlos Syndrome and funds for Cincinnati Children’s Hospital. The SouthStars Soccer Club Team Lightning hosted a bowl-a-thon at Poelking Lanes South in honor of Madison.

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EDS – Chiari Walk & Run in Milford, CT

Posted on May 21, 2015

EDS – Chiari Walks are being planned for EDS Awareness. Here is a well-organized walk that received newspaper coverage in Milford, CT. Jackie Stager is a smart, talented, and spirited young teenager with plenty of dreams, hopes, and aspirations just like any other 14-year-old.

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McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome

Posted on May 15, 2015

These very talented students are providing awareness for a child with Ehlers-Danlos Syndrome. McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert benefiting a Woodlands-area family in need.

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Henry Has Classical Ehlers-Danlos Syndrome

Posted on May 13, 2015

Little Henry and his family are struggling with Classical Ehlers-Danlos Syndrome. It took a year to be diagnosed. Now that the cause of his symptoms has been identified, his parents can better care for him.

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The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome

Posted on April 25, 2015

Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]

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