Wednesday, Aug. 10, 2022 |
Share this story
Federal effort targets Fragile X genetic disorder
By PAUL C. CURTIS
TGI Staff Writer
There was good news and bad
news for Joanne Streeter of Wailua last week.
First the good
President Clinton signed into law the Children’s Health Act of 2000,
which among other things appropriates money for research to find a cure for
Fragile X, the most common inherited cause of mental retardation and learning
The bad news is that Streeter’s son, Cody, who suffers from
Fragile X, had to be flown to Honolulu for treatment after experiencing severe
seizures that sometimes accompany the condition.
This week, he was back at
home and all right.
The bipartisan legislation is considered a milestone in
the struggle for a cure for Fragile X.
“I am particularly pleased that
this legislation provides new authority to expand research for the treatment of
chronic and acute diseases affecting children, improve the safety of childcare
centers, and ensure safe and quality mental health treatment services,” Clinton
said during the health act’s signing ceremony.
One provision of the bill
directs the National Institute of Child Health and Human Development to
“expand, intensify and coordinate research on Fragile X.”
In addition, it
requires the institute to “make grants for the development and operation of at
least three centers to conduct research for improving the diagnosis and
treatment of, and finding the cure for, Fragile X.”
In a separate section
dealing with pediatric research, including Fragile X research, the U.S.
Secretary of Health, Education and Welfare has been authorized to repay up to
$35,000 per year in educational loans for qualified health professionals who
agree to conduct pediatric research (including Fragile X research).
X causes an underproduction of a protein critical for mental development. It
affects about one out of every 2,000 boys and one out of every 4,000 girls,
making it more common than muscular dystrophy and cystic fibrosis.
X results in mental impairment ranging from mild learning disabilities to
severe mental retardation, and can also include seizures, aggressive outbursts
and severe anxiety.
One of every 267 women is a carrier of Fragile
Katie Clapp, president of FRAXA Research Foundation (which supports
research to find a cure and co-sponsors research with the National Institutes
of Health), and Jeffrey Cohen, president of the National Fragile X Foundation
(which promotes education, awareness and research and sponsors a bi-annual
international Fragile X conference), are both Fragile X parents. Each thanked
Clinton for signing this bipartisan legislation into law.
“That tells us in
the Fragile X community that when children’s health is concerned, the system
does indeed work for the children, our nation’s most precious resource,” Clapp
“Awareness of and research into Fragile X will take a giant step
ahead,” Cohen said. “When I consider also that, earlier this year, in a joint
resolution, Congress declared July 22 as National Fragile X Awareness Day, I’m
encouraged that this is just the beginning.”
Fragile X and the more than
90,000 affected Americans and their families “are finally being recognized,” he
Fragile X should benefit research into other genetic diseases,
according to Cohen.
Staff Writer Paul C. Curtis can be reached at
email@example.com or 245-3681 (ext. 224).
Your email address will not be published. Required fields are marked *
By participating in online discussions you
acknowledge that you have agreed to the TERMS OF SERVICE. An insightful
discussion of ideas and viewpoints is encouraged, but comments must be civil and in good taste, with no personal attacks. If your comments
are inappropriate, you may be banned from posting. To report comments that you believe do not follow our guidelines,
send us an email.