Fragile X Banbury meetings were established in 2000 at Cold Spring Harbor Laboratory in New York, thanks to Nobel Laureate James D. Watson, who proposed them to stimulate new research. The annual meetings from 2000 through 2005 were funded by a grant from NIMH with additional help from NICHD; Co-Principal Investigators were William Greenough, of the University of Illinois at Urbana-Champaign and Katie Clapp, of FRAXA. The meetings run for two and a half days and are wonderfully intense, with people discussing Fragile X from 8am until late in the evening.

In 2006, NIMH funded an additional five years of annual meetings through a grant awarded to William Greenough (Univ. of Illinois), Elizabeth Berry-Kravis (Rush University), and Katie Clapp (FRAXA Research Foundation). The 2008 meeting was organized by Eric Klann (Emory), Peter Vanderklish (Scripps), in addition to W. Greenough, E. Berry-Kravis, and K. Clapp.

The 2005 meeting focused on identifying outcome measures which are needed to test potential treatments. A number of practical measures have been validated in studies with human patients and with animal models of Fragile X. These measures are being used in a number of labs to test potentially therapeutic compounds.

The 2004 meeting was co-chaired by Will Spooren, a drug development scientist of Hoffman LaRoche, and Bill Greenough. The focus was pharmacological treatments for Fragile X: which existing drugs and experimental new compounds might be effective for treating Fragile X. Participants were equally drawn from the pharmaceutical industry, representing seven different companies including Novartis, Addex, Lilly,Merck, and Hoffman LaRoche, and the university-based basic research community. Several collaborations between industry and university scientists were established at the meeting.

FRAXA sponsored a research meeting at Arden House in Harriman, NY, in July 2005.
Participants included Story Landis (Director, NINDS), Bill Greenough (University of Illinois), David Nelson (Baylor College of Medicine), Tom Jongens (U Penn), Jennifer Darnell (Rockefeller), Samie Jaffrey (Cornell), Miklos Toth (Cornell), Mark Bear (MIT), Holly Cline (CSHL), Walter Kaufmann (Kennedy Krieger Institute), Eric Klann (Baylor), Yue Feng (Emory), Stephanie Ceman (Illinois at Urbana Champaign), Justin Fallon (Brown), Gary Bassell (Albert Einstein), Ted Brown (New York IBR), Carl Dobkin (New York IBR), Bob Denman (New York IBR), Bob Wong (SUNY Downstate), Suzanne Zukin (Albert Einstein), Todd Sacktor (SUNY Downstate), Sam Schacher (Columbia), Henri Tiedge (SUNY Downstate), Carolyn Beebe Smith (NIMH), Daniela Zarnescu (Emory).

Future meetings of this sort are being planned (2008).

In July 2004, scientists gathered at Salve Regina University in Newport, RI, to investigate the common neurobiological pathways in Fragile X and autism spectrum disorders. The meeting was sponsored by FRAXA and three of the National Institutes of Health (NIMH, NICHD and NINDS).

Researchers have found similarities in individuals with Fragile X and autism spectrum disorders. At least 25% of people with Fragile X also have autism, and Fragile X is the most common known genetic cause of autism.

Many people believe that there are shared genetic mechanisms between Fragile X and a subgroup of individuals with autism. Further study of the Fragile X gene and genes it regulates could offer important insights into the genetic basis of autism. But little research has been conducted involving direct comparison between individuals with autism spectrum disorders, Fragile X, and autism with Fragile X.

This workshop brought together leaders in these fields to develop future directions for research that will accelerate progress on each of the disorders. We thank Steve Moldin of NIMH, Laura Mamounas of NINDS, and Alice Kau of NICHD, the co-chairs, Dr. Dan Geschwind and Dr. Robert Wong, and all the participants for an extraordinary meeting.

Meeting Report