Alexandra B. from Ohio

Posted on January 16, 2017

Thank you for your dedication and selflessness. You make lives brighter and hearts more full. While we may need to rely on braces to physically support our joints, it is your support that has kept so many from crumbling physically and emotionally. Your tireless efforts reach farther and deeper than you could know. Thank you.

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Jenny – DFW EDS Group

Posted on December 18, 2016

So exciting to hear about the wonderful things that you continue to do for our zebra community! As a support group, we are so grateful you support us! The DFW group is almost to 650 members and growing! Thank you for all you do for our community!

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Sarah – EDS VT

Posted on December 13, 2016

Hi John and Deanna – I am so grateful for all of the work you do for us, as individuals and also as group leaders.  Thank you from the bottom of my heart!   Most especially I appreciate your webinars, and how great it is that you notify us so far in advance that they […]

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Christina Metro DC Area EDS Support Group

Posted on December 13, 2016

Thank you so very much for all you have done/do  to help support so many people, and their family, friends and caregivers living with EDS!  

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Nilima in Texas

Posted on December 9, 2016

I wanted to thank you for all you have contributed. My own father never took a real interest in understanding my HEDS. He finally watched one of the educational webinars one day and I think the part about you doing this for your daughter really got to him. He started independently researching HEDS after that. […]

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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%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

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