Scientific Brainstorming Session

June 1st – June 3rd, 2001

On the weekend of June 1–June 3, the Dysautonomia Foundation sponsored a scientific brainstorming session at the Mount Sinai School of Medicine in New York City. Now that the gene has been found, the discussion focused on the possible next steps in FD research.

There were scientists attending from around the world—from universities and from the NIH. In the course of the 3-day weekend event, the scientists met and socialized with a number of FD patients (of varying ages) and their families.

As a result of this weekend-long series of meetings and presentations, research grant proposals will be sought by the Dysautonomia Foundation to try to understand the functioning of the gene. Since the mutations were published, there has been an enormous amount of work done, and the Foundation will aggressively search the globe for more researchers to become involved in solving this mystery. This weekend was a giant positive step toward better treatment and eventually a cure. The sessions have also laid the framework for an expanded Scientific Advisory Board for the Dysautonomia Foundation.

In attendance were: Front Row (L-R): Dr. Felicia B Axelrod; Dr. Kurt Hirschhorn; Dr. Susan Slaugenhaupt; Dr. Robert Desnick  Back Row (L-R): Dr. David Zagzag; Dr. Claus Scheidereit; Dr. Robert Gross; Dr. Michael Brownstein; Dr. Max Hilz; Dr. Carole Oddoux; Dr. James Lupski; Dr. Gail Sonenshein; Dr. James Gusella