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FRAXA President, Katie Clapp, and Vice President,
Mary Beth Busby, greet President Clinton at The White House.
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The Children's
Health Act of 2000 authorized funding for research on many children's diseases
and disorders, including Fragile X. It authorized establishment of three Fragile X Research
Centers. These centers would not exist if not for the efforts of Fragile X families and friends
around the country.
The three Fragile X research centers are:
- University of North Carolina at Chapel Hill
Don Bailey, Director
- Baylor University
David Nelson, Director
- University of Washington
Charles Laird, Director
Congress has responded
enthusiastically to all of the letters, emails, phone calls, and
meetings initiated by Fragile X Advocates around the country. Each
year, Congress specifies in its Appropriations Committees' Reports
how the Federal Budget for the coming year is to be spent. Each of the past five years,
NIH has enhanced its research efforts on Fragile X. In addition to funding numerous separate grants, the
NIH and FRAXA Research Foundation have partnered to fund
of nine grants, which resulted from a special Request For Applications
(RFA) of 2000.
The US House
of Representatives passed a resolution in support of National
Fragile X Research Day on October 5th. Each year FRAXA celebrates National Fragile X Research Day by holding Fall
Fling for Research events around the U.S. Please join us if you can
by holding or attending one of our events!
You can join FRAXA's Advocates by contacting
David Busby (phone (202) 824-8820) or
Katie Clapp (phone (978) 462-1866).
For more on our advocacy
efforts please read the Report from Washington in our Newsletters