PUBLISHED
FOR FRIENDS OF CONQUER FRAGILE X FOUNDATION
Summer
2003 Newsletter
MESSAGE
FROM THE PRESIDENT
All of us in the fragile X community are very
happy that the National Institutes of Health,
with a mandate by the Children's Health Act of
2000, recently invested $3,248,780 in three new
Fragile X Research Centers. All of us who work
to cure fragile X, all our families and our scientists
are thrilled at what these new centers will mean
- a ³hub² for fragile X research. New
treatments will emerge from the work done at these
centers. Focused studies will provide insights
into the development and management of the disorder
in target populations. New academic approaches
that will maximize the skills of our children
will be implemented in our schools. And, it all
will bring us one step closer to that for which
we all strive, a cure for fragile X.
As our families and others affected
by fragile X continue to meet and share information,
the new Centers will play a pivotal role in developing
new strategies to help manage issues such as school,
work and social settings. Already, programs such
as the one at UNC (see the article on page 2)
have emerged as part of the new Centers.
CFXF is dedicated to bringing outstanding
international research into the mainstream of
fragile X research. We continue our search for
new and exciting projects as well as approaches
to energize the research, keeping it vibrant and
dynamic. Our approach remains one that fosters
cooperation and collaboration among scientists
whenever possible. In the past few months three
outstanding examples of collaborative fragile
X research have developed through our efforts,
and we are delighted.
We are happy to celebrate in this
issue, the charity of one of our Directors, Mr.
Arthur Rosenberg. Through his work with AirLifeline,
Mr. Rosenberg donates so much of himself to help
critically ill. Yet, he tells us that he benefits
as much by the gift as any of those he helps.
Please be sure to read the article on page 3.
I thank you for your kind support
throughout the year. I hope that you will continue
to remember CFXF with your donations, and be assured
that your gift will support research that will
someday lead us to a cure for fragile X, the leading
known cause of mental retardation.
Harris Hollin
President
The
Boorys Host
Their Third New Jersey Fundraiser
On
May 15, 2003, Cure Fragile X Foundation founders,
Eric and Elissa Boory of Cherry Hill, New Jersey,
held their third fundraiser for Fragile X Syndrome
at The Mansion in Voorhees, NJ. Over 400 people
attended the event which included cocktails, buffet,
dinner, raffle, silent, fishermans and live auctions.
Dr. Paul Hagerman of the M.I.N.D. Institute of
the University of California at Davis updated
the crowd on his latest research efforts. Also
in attendance were Louise Gane, M.S. of the M.I.N.D.
Institute, Robbie Miller from the National Fragile
X Foundation, Harris and Sande Hollin of Conquer
Fragile X Foundation and Jennifer Keenan from
the Fragile X Association of New Jersey.
An executive board of ten, along with seventy-five
event committee members worked diligently for
over a year to help make this a very successful
event.
One of the most popular categories for bidding
was travel. This category included trips to Italy,
Hawaii, Bermuda, Dominican Republic, Canada, Utah,
California, Disney World, New York City and a
7-day Mediterranean Seabourn Cruise. Other hot
prizes featured a private dinner by a famous TV
chef in your own home, unique sports memorabilia
and fabulous restaurant packages.
The event was a huge success netting $210,000,
and additional contributions are still arriving.
The money will be distributed to the following
organizations: The M.I.N.D. Institute, National
Fragile X Foundation, Conquer Fragile X Foundation
and FRAXA.
The Boorys have three children, Alex, 11, Sydney,
6, and 8 year old Seth, who has Fragile X Syndrome.
We are very grateful to this energetic couple
and all those who worked so hard to help make
this fundraiser a great success.
NIH Awards Three Fragile X Research Centers
In early April, NIH made the long awaited announcement
of the results of the competition for the three
Fragile X Research Centers authorized in the Children's
Health Act of 2000. The Centers were funded with
$3,248,780 for the first year. The competitive
awards were made to:
Dr. Don Bailey at the University of North
Carolina
Dr. Charles Laird at the University of Washington
Dr. David Nelson at Baylor College of Medicine
In the coming years, these centers will represent
the core of fragile X research in the United States.
With its commitment to international fragile X
research, CFXF will look for many more opportunities
for collaboration and cooperation among the scientists
at these new centers and among fragile X researchers
around the world. The introduction of projects
and scientists from abroad into the mainstream
of US domestic fragile X research will help keep
fragile X research vibrant and dynamic.
Congratulations to all those who worked long
and hard to prepare and present a variety of interesting
and competitive proposals! And the best of luck
to the winners!
All of us in the fragile X community are very
happy that the National Institutes of Health,
with a mandate by the Children's Health Act of
2000, recently invested $3,248,780 in three new
Fragile X Research Centers. All of us who work
to cure fragile X, all our families and our scientists
are thrilled at what these new centers will mean
- a ³hub² for fragile X research. New
treatments will emerge from the work done at these
centers. Focused studies will provide insights
into the development and management of the disorder
in target populations. New academic approaches
that will maximize the skills of our children
will be implemented in our schools. And, it all
will bring us one step closer to that for which
we all strive, a cure for fragile X. 
On
May 15, 2003, Cure Fragile X Foundation founders,
Eric and Elissa Boory of Cherry Hill, New Jersey,
held their third fundraiser for Fragile X Syndrome
at The Mansion in Voorhees, NJ. Over 400 people
attended the event which included cocktails, buffet,
dinner, raffle, silent, fishermans and live auctions.
NIH Awards Three Fragile X Research Centers
