Community
#GivingTuesday brings people together to support Ehlers-Danlos organizations
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 […]
Firefighters in UK Raise Money for Ehlers Danlos Syndrome
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 […]
EDS & POTs EDNF Webinar – Recording Available
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.
EDS Awareness Educational Series – Recording Available
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 […]
“Pain Awareness Month” to raise awareness of the U.S. Pain Foundation
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 […]
New Strategic Marketing Resource for Ehlers Danlos National Foundation
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 […]
Tennis Coach Gives Hope to Teen with Ehlers Danlos Syndrome
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 […]
Ehlers Danlos Syndrome Featured in TV News Story – Watch Video
Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station. This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video EDS Awareness Notes: In media reports, there tend to be some inaccuracies or misleading statements. We wanted to […]
