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 2007 meeting was organized by
Stephen Warren (Emory) 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 good, practical measures have recently 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. The
meeting had a "cut to the chase" treatment development
orientation.
Much discussion centered on receptor/
transmitter systems which research
indicates are impaired in Fragile X,
particularly those involving glutamate and
GABA, and compounds which target
those systems. By the time we finished,
it had become clear that more
work is needed to design good clinical
trials to effectively test drug treatments
for Fragile X. Several exciting
new collaborations between industry
and university scientists were established
at the meeting.
FRAXA has hosted annual Fragile X Research Forums at the Society for Neuroscience Annual Meeting to
enable investigators, postdoctoral fellows, and
students to meet leaders in this field and learn about the latest advances in
understanding Fragile X.. Funded with
support from Novartis Pharmaceuticals
The 2006 meeting was chaired by Gary Bassell, PhD, and Yue Feng, PhD, both of Emory University
Speakers were Story Landis (Director of NINDS), Eric Klann (NYU), Robert Wong (SUNY),
Mark Bear (MIT), and Stephen Warren (Emory)
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)
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 a number
of similarities in individuals with
Fragile X and autism spectrum
disorders. In fact, 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 at least 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 very
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
