scouts-l Mail Archive for July of 2000: Your indulgence, please...
Thu Jul 13 2000 - 11:12:31 CDT
I just received a copy of this press release. As most of you know, my #3 son
Chris has Fragile X Syndrome. Now, all this is nice, but if you know a
Senator, Fragile X has been in and then out and then in again and out again
of a bill for funding research that is in the Children's Health Act that
Kennedy is suppose to bring before the Senate in the next day or two, if you
have activist under your skin someplace.
>>>>All FWD from this point
FOR IMMEDIATE RELEASE Contact: Joy Ditto Wednesday,
July 12, 2000 202-224-4224
Senate Approves Hagel Resolution on Fragile X Awareness
Washington, D.C. -- The Senate last night approved a resolution
sponsored by U.S. Senator Chuck Hagel (R-NE) designating Saturday,
July 22, 2000, as "National Fragile X Awareness Day."
"By setting aside a day devoted to Fragile X awareness, the Senate has
acknowledged the importance of preventing this heartbreaking
disorder," said Hagel. "Only through awareness will Congress and the
public devote the additional resources necessary to develop treatments
and an eventual cure for those suffering from this debilitating
Senate Joint Resolution 268, sponsored by Senator Hagel and Senator
Edwards (D-NC), passed the Senate by unanimous consent on Tuesday
night. Senators Hagel and Edwards were joined by 39 bipartisan
cosponsors in forwarding this resolution establishing July 22, 2000,
as "National Fragile X Awareness Day." The date coincides with a
national conference on Fragile X being held in Los Angeles.
"I am confident that American ingenuity and medical technology will
eventually prevent the occurrence of genetic disorders like Fragile
X," added Hagel. "But only with increased public awareness will
enough resources be provided for sufferers to get help sooner rather
In 1991, medical researchers identified the cause of Fragile X as a
defective gene that fails to produce a specific protein necessary for
proper brain function. Fragile X affects one in every 2,000 boys and
one in every 4,000 girls. Those afflicted with this condition often
suffer mild to severe mental retardation, anxiety, seizures, and a
variety of learning disorders. Most children with Fragile X will
require a lifetime of specialized care at an estimated cost of over $2
Senator Hagel also recently included language in the Senate-passed
Health and Human Services appropriations bill to direct the National
Institutes of Health to coordinate research and funding for Fragile X.