About Asheville NC EDS Support Group

The Ehlers-Danlos Syndrome Support Group of Asheville was established in 2015.

Now that the current estimates are that 1% of the population has EDS, it is more important than ever that we help support and educate our fellow patients, and provide guidance and information to physicians who are unfamiliar with or new to treating EDS patients, or just need a refresher.

How Our Group Plans to Help

We have many plans for the future, but for now, our mission and vision are as follows:

Mission

Our mission is to provide education and support to individuals with Ehlers-Danlos Syndrome and their families and to foster compassion, awareness and knowledge of EDS within the local and medical communities in Asheville and Western North Carolina.

Vision

To use our resources, time and talents to create a supportive and educated local community, from patients and families to caregivers and providers, through support group meetings, seminars, education and awareness events and networking in the local community.

To do this, we plan to:

• Hold monthly support group meetings for patients and their families and caregivers
• Hold annual fundraisers to promote awareness and raise money to pay for local awareness initiatives, seminars and events, and to send at least one administrative member and one patient to the annual EDNF conference.
• Hold seminars and classes locally to provide solid, evidence based and physician supported information to new patients, families and healthcare providers on best management strategies and solutions for dealing with the challenges of EDS
• Manage a Facebook Group for online support, this web presence, and a Facebook page for social integration of EDS awareness and fundraising

The operators of the website, Facebook pages, group meetings and event coordinators are all Ehlers Danlos patients themselves. Like other patients, we have limited amounts of energy, and most of our financial resources are already committed to the expensive nature of our healthcare management.

Donations Are Appreciated

We are always more than grateful for financial or in-kind donations, or for labor in helping carry out the numerous tasks that keep this support group going. We will be publishing a wish list and starting a GoFundMe in the coming weeks and appreciate your patience while we decide on the most efficient way to achieve our goals. We are not 501(c)3 certified as a nonprofit, and there are no tax benefits to donating.

Your contribution buys a large quality of life increase for as many patients as we can reach. More funds mean we can reach more people.

Leadership

Our organization is very informal and fluid at the moment, however,

Janet Bray serves as the webmaster, graphic designer, event planner and marketing force. She brings her creative skill-set to help create a compelling message and then to bring people into the events and seminars.

Jenn Conwell, a teacher by trade, will be working with Dr. Ireton to create some educational classes to help spread correct information and help the newly diagnosed understand how their EDS affects their lives. She is also interested in helping youth who have EDS.

The other members of the group are providing supportive roles as they arise and as they can.