Fundraising
Successful Ehlers-Danlos Hoofbeat Run Walk-N-Roll in King Ferry, NY.
Staff writer Gwendolyn Craig Thank you to all who participated in, volunteered at and donated to the Ehlers-Danlos Hoofbeat Run Walk-N-Roll on August 6th. KING FERRY — Elizabeth Shaw loves to swim, bike and practice CrossFit. She has cycled around every Finger Lake, and for about three years, she has been a local personal trainer, helping […]
Ehlers-Danlos Hoofbeat Run Walk-N-Roll – August 6, 2016
Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile run/walk/roll, a 5K run/walk and a ½ marathon run happening on August 6, 2016 in King Ferry, NY. . . This is a noncompetitive Run/Walk/Roll event that serves to raise donations and awareness for Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. All proceeds will […]
The Reality of Ehlers-Danlos Syndrome
After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – WKTV.com UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]
Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome
This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]
Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome
By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome. His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening. Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]
Trevor will be Riding 100 miles to Raise Cash for Hypermobility Association
Trevor Sleeman will be riding his bicycle to raise awareness and funds for the Hypermobility Association. [Halstead Gazette] Trevor will take part in a 100-mile bike ride to raise money for people with a painful medical condition after his wife was diagnosed with it. Trevor Sleeman (pictured), 49, will take part in the Prudential 100 bike […]
UK woman speaks out about her Ehlers-Danlos Syndrome
Natasha is struggling with walking and needs funding for a wheelchair to cope with her Ehlers-Danlos Syndrome. She helps raise awareness by working for EDS Support UK. Published by: Stephanie Price A MELIDEN woman who suffers with a rare condition wants to raise awareness as well as raise money to fund an electric wheel chair. Natasha Evans, […]
Soccer Club Supports Teammate With Ehlers-Danlos Syndrome
Watch this TV news video about Madison whose soccer team helps raise awareness for Ehlers-Danlos Syndrome and funds for Cincinnati Children’s Hospital. The SouthStars Soccer Club Team Lightning hosted a bowl-a-thon at Poelking Lanes South in honor of Madison.
