Archive for the ‘Community’ Category
Posted on December 6, 2014
Ruth Baker is telling her story to increase EDS Awareness in the UK. She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is so rare that even doctors don’t know what you’re talking about.” Doctors need to understand that EDS is perceived as a rare disorder only because […]
Posted on December 2, 2014
Please join us this Tuesday, December 2 in our support of all EDS organizations, including the EDNF. ****** #GivingTuesday brings people together in a seasonal call to action of generosity and service in the midst of holiday shopping. Last year over 10,000 organizations in 46 countries united for #GivingTuesday. With your help this year will be […]
Posted on November 28, 2014
Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]
Posted on October 16, 2014
Listen to this webinar about EDS and POTS. Also, watch another video of Dr. Rowe’s webinar for EDS Awareness Educational Series presented in July 2014.
Posted on September 17, 2014
Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many EDSers are misdiagnosed with psychiatric conditions before their Ehlers-Danlos, Dysautonomia or associated physical conditions are identified. Dr. Barnum addresses what can happen in extreme […]
Posted on September 14, 2014
September is “Pain Awareness Month” in Scituate, RI and several other U.S. towns. Advocates are raising awareness of chronic pain conditions and the U.S. Pain Foundation. Stuart and Ellen Lenox Smith have been very active with the U.S. Pain Foundation and EDS Awareness for Ehlers-Danlos Syndrome. Their “Pain Awareness Event” at Miriam Hospital in Providence on Saturday, Sept. 27th will conclude […]
Posted on September 12, 2014
We are pleased to announce: Jane Mitakides has been appointed to the Ehlers-Danlos National Foundation (EDNF) board of directors. Her husband, Dr. John Mitakides, is one of our Educational Webinar speakers and a well-known EDS / TMJ expert. Jane has a background in strategic marketing and communications, and will be a valuable asset to the EDNF. She […]
Posted on September 6, 2014
Megan has a new motivation to stay active despite Ehlers Danlos Syndrome. Her high-school tennis coach has paved the way for her to participate in modified varsity competition! Her strength and dedication has inspired her coach and peers. Megan also participates in the EDS support group in Columbus, Ohio. By Steve Blackledge “Les Somogyi couldn’t help but feel for […]
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