Archive for the ‘Awareness’ Category
Posted on February 7, 2015
In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT. Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her! By Kathleen Schassler, The […]
Posted on January 29, 2015
10-year-old Ellen joins the University of Wisconsin’s softball team as an honorary member. Now, this young EDSer can experience the camaraderie of team sports – without the physical risk. By Korey Mallien. “The chronic pain and fatigue that 10-year-old Ellen Tellstrom deals with every day subsided this week when she met her new college softball teammates. “It was amazing,” […]
Posted on January 20, 2015
After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]
Posted on January 17, 2015
The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost. Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome […]
Posted on January 13, 2015
Five-year-old Amelia Gibson and her father will be holding a “Father & Daughter Dance” on January 17th to raise awareness and funds for Ehlers Danlos Syndrome. Amelia and her mother are raising EDS Awareness in Indiana hospitals by giving packages containing personal-care items to patients. Amelia and her mother have EDS. Watch the video about their EDS awareness project to help hospital […]
Posted on January 10, 2015
When Jojo was diagnosed with EDS, she felt relieved! “Finally, I had an answer to why my body is the way it is.” Her EDS went undiagnosed for 24 years! This is not surprising, as our poll indicates more than 50% of EDS patients wait more than 20 years for a proper diagnosis.
Posted on January 7, 2015
Watch this fun video of 10-year-old Erin joining the Ohio State Hockey Team through a program called Team IMPACT. Since Ehlers-Danlos makes Erin more susceptible to injury, it’s unlikely she’ll be able to participate in sports with her peers. But, spending time with the Buckeyes gives Erin the experience of being on a team. Erin has gained the […]
Posted on January 5, 2015
Dominic McMinn was chosen for this year’s “Every Student Succeeding” award and scholarship in California. An Ehlers Danlos student in the Accelerated Reading Program, he’s not only excelled academically, but overcome great physical hurdles. He is also the the youngest award recipient. Congratulations on your accomplishments, Dominic! Submitted to the Appeal-Democrat. “Dominic was named this year’s Region […]
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