Archive for the ‘Fundraising’ Category

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Ehlers Danlos Syndrome Support Group is starting in Rochdale, UK

Posted on October 7, 2014

 Rachel Hastie is forming an EDS Support Group for her daughters and to help raise EDS Awareness. Her youngest daughter, Ellicia Grace, is showing signs of Vascular EDS. By Amy Westlake. “A support group to help those with Ehlers Danlos Syndrome (EDS) has been set up in Rochdale by former Smithy Bridge resident, Rachel Hastie […]

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Mother-Daughter Duo Use Ehlers Danlos Syndrome to Give Back

Posted on September 23, 2014

By Alia Blackburn. Five-year-old Amelia and her mother are raising EDS Awareness in hospitals.  They give packages containing personal-care items to help hospital patients, and use the opportunity to share about Ehlers-Danlos Syndrome.   CLICK THE PICTURE TO WATCH THE VIDEO. Looking at Brandy Gibson and her 5-year-old daughter, Amelia, you will notice the bond they share is inevitable. […]

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Jessica Participates in the first “Conquer Chiari Walk Across America”

Posted on September 19, 2014

Jessica Paddack has endured many surgeries throughout her 15 year battle with Chiari malformation. One of her Chiari surgeries led to the discovery of her Ehlers-Danlos Syndrome. The “Conquer Chiari Walk Across America” is this Saturday. By: RENE RAY DE LA CRUZ. The walk will be one of many across the country designed to raise funds for research, education and awareness programs. […]

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10-year-old Boy with Ehlers Danlos Inspires Hospital Staff

Posted on August 30, 2014

Toby Skerman has been promoting EDS Awareness in the UK.  This 10-year-old boy who is a patient at Great Ormond Street Hospital has inspired staff to raise funds for his wheelchair. By: Mid Sussex Times Toby Skerman, of Uckfield, has inspired staff at the Nuffield Hospital to raise enough funds to buy him the Beach Hippocampe wheelchair […]

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Life as a zebra

Posted on August 18, 2014

An aspiring and promising young gymnast learns that she will never be able to compete again after a reconstructive surgical operation goes wrong. When her body starts to break down, she hunts for answers only to find that it would stump even the best of doctors available in the Midwest. But when she almost loses […]

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11-year-old with Ehlers Danlos Syndrome Needs Accessible Van & Bath

Posted on August 8, 2014

This Ontario community has rallied to help support and raise funds for the Hennessy family. Zoe, 11, has EDS and needs an accessible van to help her travel to appointments with less hazard for herself and her family.  They are closing in on this goal and are also working towards funding a bathroom renovation so that Zoe can be independent […]

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A Musical Benefit for Chloe who has Ehlers Danlos – Hypermobility Syndrome

Posted on July 8, 2014

Chloe is determined that EDS/HMS won’t define her life.  She continues to pursue her music, and debuted her first album this year, alongside fellow musician Steve Jones! Chloe’s community will host a musical extravaganza benefit to help with her Ehlers Danlos/Hypermobility Syndrome. By Tara Cox. “A WEST Dorset UK community is rallying round to help chronically ill mum […]

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Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome

Posted on July 5, 2014

 On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane! Skydivers are raising money for a toddler with two serious medical conditions. Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday […]

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