Archive for the ‘Awareness’ Category
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 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 […]
Posted on September 5, 2014
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 […]
Posted on September 2, 2014
Maddison Parker is looking forward to having five minutes with Australian Prime Minister Tony Abbott to talk about Ehlers-Danlos Syndrome. Her persistence seems to be paying off – she is awaiting a date and time to be confirmed for the meeting. “MADDISON Parker is one step closer to getting five minutes with Prime Minister Tony Abbott. […]
Posted on July 11, 2014
POTS experts, Dr. Blair Grubb and Dr. Geoffrey Heyer, explain the symptoms and treatments. Studies have indicated that 1 in 4 of those diagnosed with POTS are disabled. Exercise helps by enhancing the effectiveness of the peripheral skeletal muscle pump, according to Dr. Grubb. By Deborah Kotz. As a consumer health reporter, I assume I’ve heard of every health […]
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