Tri-State EDS Support Group Activities in WV

Ashton Nesmith-Kochera

I wanted to touch base about my Tri-State EDS Support Group activities here in WV. We started in person support group meetings at WVU-East Healthcare last March and within one year we basically are in the verge of outgrowing our space. The amount of people who have joined has surpassed everything I ever expected. Our only FB group just hit 100 members and we have about 50 active in person support group members with 25 in attendance the past two months. We even have caught the attention of physicians & med students who have also attended. Myself and three other group members went to NIH and Rare Disease Week on Capitol Hill. After meeting with Congressmen and Senators I left more motivated than ever.

Here are a few pics of our group advocating in DC during Rare Disease Week:

Congressmen Alex Mooney of WV

Senator Joe Manchi

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,312

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