Archive for the ‘Fundraising’ Category

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Baylor College of Medicine Receives Funds to Study Ehlers-Danlos Syndrome

Posted on August 15, 2013

A generous gift to Baylor College of Medicine will further Ehlers-Danlos Syndrome research. Bayan Raji Reporter-Houston Business Journal “Two philanthropic donors gifted $1 million to Baylor College of Medicine with the hopes researchers will be able to advance the study of a rare, incurable tissue disorder. Baylor geneticist Dr. Brendan Lee will use the gift from Pamela and David Ott to establish […]

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Service Dog Improves Quality-of-Life for Ehlers-Danlos Patient

Posted on August 14, 2013

Sue is getting much needed help from her  four-legged canine friend named Quizzy. Published by http://www.timesandstar.co.uk “Sue Holmes, 46, from Eaglesfield, near Cockermouth, suffers from an excruciating condition called Ehlers–Danlos syndrome. The hereditary illness is so severe that it leaves her bedridden for long periods. She uses either crutches or a wheelchair, and suffers from regular dislocations, torn […]

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EDS, an Invisible Illness that Hides the Pain and Heartache

Posted on August 12, 2013

Jodie Vasquez, 18, has Ehlers-Danlos Syndrome. She and her family spread awareness whenever they can. Her most recent project, Jodie’s Journey, is for the Sick Children’s Trust, which provides accommodation for families of children in UK hospitals. ” Jodie Vasquez is calm, poised and beautiful. Her flawless skin and tallframe sparks envy among her peers – yet […]

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London Marathon to Raise Money for Ehlers-Danlos

Posted on July 12, 2013

Guitarist, Raff Achour, is a runner and has taken part in the London Marathon to raise money for Ehlers-Danlos Support UK.  Ehlers-Danlos Syndrome affects both his seven-year-old son and his son’s mother. By: Annabel Langley “AUDIENCES will be climbing the Stairway To Heaven when a popular Led Zeppelin tribute band comes to Newbury next weekend. Boot […]

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Jordan Egan’s Song “Easy for an Angel” climbs the charts

Posted on July 10, 2013

Jordan has received much publicity for her iTunes song.  She is a very talented entertainer with EDS.  We are following the progress of her awareness and fundraising efforts. Jordan Egan’s song “Easy for an Angel”has climbed the iTunes chart after her appearance on the TV Show “Saturday Night with Miriam”.   “Jordan Egan’s song Easy […]

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iTunes song helps fund EDS treatment for Irish teen

Posted on July 8, 2013

Jordan is seeking creative ways to pay for her EDS treatment. Her iTunes song may help  the teenager fund EDS treatment which is not covered in Ireland. by Naomi Linehan “This weekend on Saturday Night with Miriam George surprised a loyal fan of the programme with a big bunch of flowers. Jordan Egan is 16 years old […]

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Every Day Begins the Same Way – With Medication

Posted on July 6, 2013

    By Justin Dacey | jdacey@mlive.com  Vacha’s treatments are experimental and very expensive.  She is working to make her life with Ehlers-Danlos Syndrome a little better.    JACKSON, MI — “Rocking slowly back-and-forth on her mother’s screened back porch in Summit Township, Elizabeth (Alden) Vacha forces a smile, disguising the pain and frustration she feels. […]

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Sometimes It Takes Only One Person to Create Significant Change!

Posted on June 12, 2013

Rebecca and Kris Mills inspired the charitable works of the Life of Children. That support is vital for the children with disorders like Ehlers Danlos Syndrome. Oakville Beaver  By John Bkila   Sometimes it takes only one person to create significant change — like Oakville’s Brooklyn Mills who inspired the creation of the ILC foundation.   Improve the Life of […]

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