Fundraising
Annabelle Has Life-Threatening Vascular Ehlers-Danlos Syndrome (VEDS)
Sixteen-year-old Hannah Alderson is helping to raise funds for Annabelle while promoting EDS Awareness in the UK “A KIND-HEARTED teenager has completed a 10k run with her mum to raise money for a Bury youngster with an incurable and life-threatening condition. Four-year-old Annabelle Griffin, of Wilby Close, Brandlesholme, suffers from life-threatening Vascular Ehlers-Danlos Syndrome (VEDS) which means […]
Starlight Foundation Grants Wish For EDS Boy
An eight-year-old EDS boy’s dream of driving a Lamborghini has come true thanks to the Starlight Children’s Foundation. “Cameron Jones suffers from a complex form of the genetic disorder called Ehlers Danlos Syndrome, where collagen fails to form properly in the body that affects the skin, ligaments, and internal organs. Despite spending a lot of time in […]
National Champion Figure Skater John Coughlin is an Ehlers Danlos Syndrome Supporter
John’s mother struggled with pain and was finally diagnosed with Ehlers-Danlos Syndrome. The Ehlers-Danlos National Foundation (EDNF) is pleased to announce that U.S. pairs figure skater John Coughlin has become a public supporter of the organization. Coughlin lost his mother to Ehlers-Danlos Syndrome (EDS) in 2010, and he is committed to raising awareness and increasing support for […]
EDS Support Group in Lancaster
This EDS Support Group is promoting EDS Awareness in Lancaster. By EMILY PEIFFER Staff Writer epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic disorder, are now at the checkout counters of four local Turkey Hill markets. The driving force behind […]
Hannah’s Cartoons Improve Communication
Hannah spreads EDS awareness through her creative cartoons. Her Stickman booklets and information cards have enlightened and entertained many readers. They have provided an alternative way for EDSers to express their needs. “Hannah was diagnosed with HMS aged 24, having been symptomatic all her life. She did well in school and university, but a year […]
