Community
EDS Awareness Speaker Series – The Evolution of Genetic Diagnosis – Recording Available
EDS Awareness invites you to watch this FREE webinar recording! Our presenter for November 20th was Stephanie Gandomi, MS, CGC, LGC She is a Licensed Genetic Counselor Her topic was: “The Evolution of Genetic Diagnosis and Why This Matters In Patient Care!” The recording of this presentation is now available at the following link: Click here to […]
Ayiana Lives With the Constant Pain That She Endures Each Day
This courageous young lady has a faith in God that helps her manage her pain from Ehlers-Danlos Syndrome. By: Daniel Elizondo Silsbee, TX Living life as a vibrant 14-year old teen is the epitome of life. Football games, birthday parties, hanging out with friends. It’s that age when you are on the brink of maturing […]
TV News Report: Ehlers-Danlos Leads to Bogus Child Abuse Allegations – Watch Videos
All charges were finally dismissed after false child abuse allegations kept Andrew Huber separated from his daughter for nine months. She has been diagnosed with EDS. Watch the videos below to hear about the family’s ordeal. Similar articles appeared on Yahoo Shine and in the news. Watch them on the Katie Couric Show which aired on […]
EDS Awareness Speaker Series – Alberto Friedmann – Recording
We had a special event for our EDS Speaker Series session on November 4, 2013. Our EDS Partners at Arming Champions (Allen and Carolyn Fisher) conducted an interview with Alberto Friedmanncall for them who is a Martial Arts Master with Ehlers-Danlos Syndrome. He also teaches martial arts and self-defense to children and adults with special needs. You can listen […]
Discovery Health Channel: Ehlers-Danlos Syndrome
Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face. It addresses EDS Hypermobility and Vascular types.
Erika Gets Extreme Makeover to Her Home
Erika Heitman, who has Ehlers-Danlos Syndrome, now has a more accessible home – thanks to the work of the nonprofit organization Welcome Home Angel. By Zach Hanner Breakingnews@StarNewsOnline.com “A crowd of around 40 people gathered at the quaint little cottage on Carolina Beach. They chanted, “Move that lift! Move that lift,” a la “Extreme Makeover: […]
Nationwide Children’s Hospital Columbus Marathon: Oct. 20, 2013
What an exciting opportunity to promote EDS Awareness with this marathon in Columbus, Ohio! Click here to see Heather at Mile 24 The Nationwide Children’s Hospital Columbus Marathon & ½ Marathon is pleased to announce its field of “Patient Champions” who will represent 24 of the 26.2 miles on this year’s course. Two of the […]
Ehlers-Danlos Patients Are Represented at Columbus Marathon
Heather represents EDS patients at the Nationwide Children’s Hospital Marathon in Columbus, Ohio on October 20, 2013. Our Columbus EDS Support Group will join Heather to promote EDS Awareness to the public! Each mile marker features a Children’s Champion, each with a different health condition. She will be at mile marker 24. Here is her story: […]
