Dysautonomia Internationals President, Lauren Stiles, presented a lecture on POTS research at the National Institutes of Health in Bethesda, MD this week. Lauren was honored to be invited by Dr. Story Landis, the Director of the National Institute of Neurological Disorders and Stroke, to present during a panel on Nonprofit Success Stories. She discussed the contributions that Dysautonomia International has made to POTS research to date through innovative collaborations. Lauren noted, October 1st will be our two year anniversary. In two short years, by bringing patients, parents and researchers together, we developed a multi-center POTS research registry, conducted one of the largest POTS surveys in history, for the first time documenting the diagnostic delay POTS patients experience (5 years and 11 months on average), utilized social media based crowdfunding to support a groundbreaking antibody study and conducted the groundbreaking study during our annual patient conference. I cant wait to see what this organization is capable of as we continue to grow. As a POTS/NCS patient myself, I feel a sense of urgency to advance dysautonomia research as quickly as possible and I know our entire board leadership feels the same way. We dont have 20 years to sit around waiting for someone else to come up with better treatments or a cure. We need answers now, and were willing to roll up our sleeves to help find those answers. Dysautonomia Internationals VP & CFO, Ellen Kessler, was also in attendance and participated in discussions with NIH decision makers and other non-profit leaders. Ellen explains, [e]stablishing relationships with NIH researchers and program directors is critical to our efforts to make POTS research a higher priority. It was a privilege to have the opportunity to share with them the needs and concerns of our community. Lauren and Ellen stopped by Dr. David Goldsteins NIH lab for lunch. Dr. Goldstein is the NIHs in-house autonomic expert, who focuses his research on catecholamines in health and disease. Lauren and Ellen also attended the first Autonomics Dinner hosted by Dr. Glen Cook of Walter Reed Military Medical Center and Dr. Hasan Abdallah of the Childrens Heart Institute. The doctors invited other medical professionals interested in autonomic disorders from the DC/MD/VA area to attend a casual dinner and discuss recent research developments and complex patient cases. Ellen commented, as a parent who had such a hard time finding local medical care for my two children with POTS several years ago, it is exciting to see more physicians taking an interest in autonomic disorders. Dysautonomia International looks forward to working with autonomic experts in other cities to facilitate physician meetings like this.
Posted on: Wed, 24 Sep 2014 20:55:38 +0000
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