Archive for the ‘Dance’ Category

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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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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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Six-year-old Lillie-Grace Fights Daily Battle with Ehlers-Danlos Syndrome

Posted on June 4, 2014

This six-year-old girl may have challenges, but she attends school and has many friends. She loves dancing, singing, and swimming.  “An inspirational six-year-old girl with a rare condition has told of her daily battle with the syndrome. Lillie-Grace Tomlinson was born with Ehlers-Danlos syndrome (EDS) but was only diagnosed last year. The condition is caused by […]

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Surgery helps some Ehlers-Danlos patients; but multi-systemic effects remain

Posted on March 16, 2014

This is a remarkable story about Kelly Koep, a young lady with Ehlers-Danlos Syndrome, who is beating the odds. Her surgeon, Dr. Fraser Henderson, is still taken aback at the extent of the disabling conditions he sees in more than 500 EDS patients. EDS expert, Dr. Clair Francomano, says, “There’s a lack of knowledge in the medical community about […]

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I am at Peace as Long as I Can Dance

Posted on June 30, 2013

 Proper and fun exercise can relieve some of the frustration we face with Ehlers-Danlos Syndrome.  By Kash Salem “The mums at my baby group are planning a 5K road run. It’s a frequent topic of conversation, and naturally, there came the part I had been dreading. “You should run with us” said one of the mums. “No […]

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