Community

“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 […]

Maddison Parker to Meet Australian Prime Minister to Discuss Ehlers Danlos Syndrome Research

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. […]

How to Help Your Ehlers-Danlos Caregiver

Caregivers are the unsung heroes in the life of the chronically ill.  They offer critical support for patients living with Ehlers Danlos Syndrome.  Learn 7 practical ways you can appreciate your caregiver and help them manage their additional responsibilities.  by Toni Bernhard, J.D.  I know how fortunate I am to have a loving caregiver. Although he may not see it this way, […]

“EDS Awareness Educational Series” Webinar – Recording Available

  EDS Awareness invites you to listen to a FREE online learning session! On August 6, Dr. Derek Neilson’s presented EDS Hypermobility Type and what is needed to change the perception of this condition.       Sponsored by www.bodysupportstore.com    WHAT:  ““EDS Awareness Educational Series” – a webinar program hosted by EDSawareness.com   PRESENTER:   Dr. Derek Neilson – Assistant  Professor […]

Exercise and Lifestyle Therapies are Key to Managing POTS

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 […]