Apr 16, 2012

Dysautonomia International is here!

I am very excited to announce the formation of a new dysautonomia focused non-profit, Dysautonomia International. We chose this name because we want to include our friends in Europe, South America, Australia, and elsewhere in our efforts.

Dysautonomia International consists of a Board of Directors, a Medical Advisory Board, and a Patient Advisory Board. We also have a growing team of volunteers helping us achieve our ambitious goals. We are bringing together patients and specialists to best serve the dysautonomia community by raising funds for research, raising awareness within the medical profession and amongst the general public, and providing patients and caregivers with accurate information and resources to make living life with dysautonomia a little easier.

Our initial Board of Directors includes: Lauren Stiles, Esq. (President [that's me]), Jodi Epstein Rhum (VP) Ellen Kessler, CPA (Treasurer), and Clover Yordanova (Secretary). We are all serving on a volunteer basis.

Our website will be up and running soon, and we will have a formal launch over the summer. We wanted to let you all know what was going on ahead of time, as many of you know us from these forums, and would love your support and involvement.

If you would like more information or find out how to get involved, please email or message info@dysautonomiainternational.org for a list of projects we are actively recruiting for.

A big thanks to everyone who has already offered to lend a hand and to those who are already working on volunteer projects! Working together, we can make a difference!

1 comment:

  1. That is so exciting! My daughter was diagnosed in Feb, and I have been trying to research (after finding out all I can about POTS) POTS foundations, or organizations that specialize in POTS. I want to raise awareness in my community (besides sending out emails & posts on FB), maybe doing some kind of "POTS awareness day" or a fund raiser (I saw one in North Carolina, but I live outside of Philly)-but I don't even know where to start! SO glad you are making a difference!!!