After a wonderful party at the 5th annual FAST Gala on Saturday night, December 1, 2012, and a fantastic brunch sponsored by Yahoo! Sports and Union Pacific Railroad on Sunday morning, families and friends gathered to hear Drs. Rebecca Burdine, Scott Dindot, David Segal, and Edwin Weeber talk about the upcoming FAST Integrative Research Environment (FIRE).
The first scientific round table was made possible by one of the single largest gifts FAST has received to date, proceeds from a class action lawsuit determined by law firm, Shepherd, Finkelman, Miller and Shah.
Dr. Burdine discussed the history of Angelman Syndrome (AS) research, why there is hope for a cure, how FAST was organized to increase funding of research into therapeutics for AS and recounted some of our successes to date. She also briefly introduced the FIRE Initiative and the four inaugural researchers involved. The fourth FIRE researcher, Dr. Anne Anderson, was unable to attend the Round-Table as she was attending the annual American Epilepsy Society meeting. Drs. Dindot, Segal and Weeber discussed how they came to be involved in AS research and what their specific projects and roles would be in the FIRE Initiative.
All three researchers touched on how parent contact and encouragement had strengthened their resolve to be a part of the AS research community. David Segal recalled how he had never heard of AS until contacted by Paula Evans and another parent in 2008, at which time he had to look it up on Wikipedia. He recalled explaining to Paula Evans and another parent that AS was a developmental disorder and not suitable for therapeutic research, but was then sent the paper on the genetic rescue of the AS mouse from Dr. Weeber’s lab. Dr Segal admitted to being blown away by the paper and started looking into how his research could help those with AS.
After brief discussions of the inaugural projects, the researchers took questions from the audience in attendance, those watching the proceedings on the livestream, through the FAST faceook page and via the FAST Twitter account. Close to 300 people attended the event in Chicago and there were over 1700 sign-ins to the live feed during the event. Questions ranged from current therapeutic strategies to the genetics of AS. The entire event was filmed by Raul Celaya and his professional crew provided by The Collective and is now available for you to view. The Board of Directors of FAST would like to extend their deepest gratitude to The Collective, Raul Celaya, Dr. Dindot, Dr. Segal and Dr. Weeber .