Archive for the ‘Fundraising’ Category

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Rowing is Still Claire’s Passion in Life, Despite Ehlers-Danlos Syndrome

Posted on March 15, 2014

Every day is a struggle for Claire, but the rewards from rowing make it all worthwhile.   Written by LYDIA FALLON “Out on the water is where Claire Connon feels most at home. Rowing down the River Cam as the sun begins to rise; wind in her hair and a smile on her face, the 28-year-old […]

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Make-up Artist, 30, has Shrunk 1.5 Inches in 2 Years Due to Ehlers-Danlos Syndrome

Posted on March 13, 2014

Denied coverage in the UK, this determined British woman needs to raise £70,000 for Ehlers-Danlos surgery in America. Nina Parsons explains, ” I just want… to get my life back and be the independent driven women I used to be…” “A young woman is suffering from a rare condition that is causing her head to sink into her […]

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“US Operation is My Only Hope of a Life Without Pain” from Ehlers-Danlos

Posted on February 23, 2014

Dismissed by the NHS, Nina now intends to raise £70k to have a life changing surgery at the CHIARI institute in the US. She says, “If I do not try to raise the money, then it is only a matter of a few years before my life will end.” By ROB SMYTH “As most people head towards […]

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Trissanna Has Ehlers-Danlos and is Helped by Local Variety Club

Posted on February 2, 2014

This BC Variety Club is a Children’s Charity Helping those in need specifically Trissanna who has Ehlers Danlos Syndrome. by  Carol Aun – Mission City Record “From the minute she wakes up Trissanna Hunter feels the pain in her joints, the cracks in her bones. If she was older, like her grandmother, she would simply she […]

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Hypermobile UK Mum will Give the Singing Performance of a Her Lifetime

Posted on January 30, 2014

Chloe is following her dreams by giving a public performance debuting their first album Songbird. By Rene Gerryts A CHRONICALLY ill mum is to defy the odds by performing her debut album live. Chloe Evans-Lippett suffers from hypermobility syndrome that’s left her wheelchair dependent, in constant pain with hips that dislocate up to 11 times a […]

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Webinar: “Pain Management and Ehlers-Danlos Syndrome”

Posted on December 19, 2013

    Topic: “Pain Management and Ehlers-Danlos Syndrome” Presenter:  Dr. Kenneth Goldschneider from Cincinnati Children’s Hospital.   Click here to access the recording ______________________________________________ About Dr. Kenneth Goldschneider Director of the Pain Management Center at Cincinnati Children’s Hospital  MD: University of Connecticut Health Center School of Medicine, Farmington, CT, 1991. Residency: Pediatrics, Duke University Medical Center, Durham, NC, 1991 […]

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Teenage Singer is Raising Funds for Ehlers-Danlos

Posted on December 15, 2013

Emilia has been such a blessing for this family. By Tui Benjamin, Reporter A TEENAGE singer-songwriter is hoping to hit the fundraising high notes by joining forces with a youngster battling a rare medical condition. Emilia Ward, aged 17, has the ‘X Factor’ according to Brandlesholme four-year-old Annabelle ‘AJ’ Griffin, who is now the aspiring […]

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Riley Cox, a 9 year old with Ehlers-Danlos, is Going to Disney World

Posted on December 12, 2013

Twelve youngsters from the “Children Exceeding Expectations” School will have their entire families joining them at Disney World!  This Christmas surprise was made possible through the donations of many, and set up through Children Exceeding Expectations program. By: Tony Casey Press Staff Writer “The Christmas surprises kept coming Sunday afternoon at Bristol Motor Speedway for the kids […]

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