Author Archive
Posted on January 7, 2018
Nathalie says because her illnesses are “invisible” people often doubt whether she really is disabled! Ehlers-Danlos Syndrome is a major disability for so many. A disabled woman says she was refused help boarding a flight because she “doesn’t look ill”. Nathalie Allport-Grantham, claims a member of staff at Stansted Airport told her she was “wasting […]
Posted on December 15, 2017
December 13, 2017 By Ellen Lenox Smith, Columnist Ellen Smith is a member of the Rhode Island EDS Support Group and very active as an advocate and speaker. People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to a hospital emergency room, due to a lack of understanding in the ER staff on […]
Posted on November 17, 2017
Hello! My name is Katie Bealka, and I am a graduate student in the Brandeis University Genetic Counseling Master’s degree program. I am looking to better what life is like for emerging adults living with Ehlers Danlos Syndrome (EDS), either the classical or hypermobile type, and need your help. Have you been diagnosed with either […]
Posted on November 4, 2017
EDS Awareness at Dayton 2017 Holistic Symposium at Miami Valley Hospital Centerville Ohio
Posted on October 8, 2017
EDS Awareness was a sponsor for the POTS 5K, at Wittenberg University in Springfield, Ohio on October 7, 1017 Click here for more information
Posted on September 26, 2017
EDSawareness and the Dayton Zebras EDS Support Group participated in the Chiari 5k Walk in Beechwood, Ohio on September 23, 2017. 300 attended the fundraiser for Chiari Research.
Posted on September 11, 2017
We participated again in a very successful EDS Learning Conference. Here are connections to activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8 New EDS Physician CME Educational Online Program announced Click here for Jon Rodis EDS Society Conference Summary Click here for Dr. Chopra’s presentation […]
Posted on September 10, 2017
Jonathan Rodis Founder and Co-leader-Ehlers-Danlos New England/Massachusetts Support Group President-Massachusetts Chapter of The Marfan Foundation Chair-Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s) National Disability and Medical Advocate for Rare Disorders Member: Winthrop Disability Commission EDS Society Global Learning Conference in Las Vegas Recap As I promised, here is my recap of the EDS […]