[Congressional Record Volume 156, Number 29 (Wednesday, March 3, 2010)]
[House]
[Page H1086]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




               NATIONAL FRAGILE X FOUNDATION ADVOCACY DAY

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentleman from Mississippi (Mr. Harper) is recognized for 5 minutes.
  Mr. HARPER. Mr. Speaker, as you may know and many of you may know, my 
wife, Sidney, and I are blessed with a precious 20-year-old son named 
Livingston and a wonderful 18-year-old daughter named Maggie. Early in 
Livingston's life, we noticed that he was not reaching developmental 
milestones as quickly as the other children his age. He was slow to 
walk, slow to talk, and at times, he would flap his hands, rock back 
and forth, and chew on a terrycloth doll that he had. Doctors 
continuously informed Sidney and me that he was developmentally delayed 
and that he would grow out of it. We were told not to be concerned.
  When Livingston was nearly 19 months old, and we were 3 months 
pregnant with Maggie, our doctor informed us that something could be 
wrong. At that time, he didn't know what it was but assured us that he 
would begin searching for what the diagnosis was. Over the next 2 
years, our lives were consumed with occupational therapy and speech 
therapy and visits to the doctor, trying to find out what we had, along 
with other diagnostic tests. Livingston was misdiagnosed with mild 
cerebral palsy and was said to be a near miss on autism. My strong and 
loving wife dealt with these issues on a daily basis and dealt with the 
brunt of the day-to-day activity with Livingston. After almost 2 years, 
we were finally able to get a correct diagnosis of fragile X syndrome.
  Most fragile X families have shared similar stories of delayed 
diagnosis. This is why I support the work of the Fragile X Clinical and 
Research Consortium. Fragile X associated disorders are genetic, 
resulting in behavioral, developmental and language disabilities 
throughout a person's life. It is linked to a mutation on the X 
chromosome and is the most commonly inherited form of intellectual 
disabilities. Fragile X is also linked to reproductive problems in 
women, including early menopause and a Parkinson's-like condition in 
older male carriers. Today over 100,000 Americans live with fragile X 
syndrome, and over 1 million Americans carry a fragile X mutation and 
either have or are at risk for developing a fragile X associated 
disorder. Further, as many as one in 130 women are estimated to be 
carriers of the fragile X mutation, according to current studies.
  Over 140 fragile X advocates visited Capitol Hill today, educating 
their Members of Congress on the potential for effective treatments, 
raising awareness of this disorder, and sharing their very personal 
stories. As one of the cochairman of this bipartisan Fragile X Caucus, 
I am committed to improving the health of children and adults across 
the country living with this disorder.
  Last year our caucus, united with the National Fragile X Foundation, 
reached many of our targeted objectives. Working with Senator Thad 
Cochran of Mississippi and other Members of Congress, we secured 
funding for a national postsecondary education demonstration program 
which was authorized in the 2008 Higher Education Opportunities Act but 
was previously not funded. This program will give hope to families and 
will allow young adults with intellectual disabilities to perhaps enjoy 
the opportunity and the experience of going to college.
  The Fragile X Caucus supported funding for the Centers for Disease 
Control to establish public health activities for fragile X syndrome, 
obtaining $1.9 million for the current fiscal year. Our coalition 
obtained report language in support of efforts at NIH for the 
implementation of their research plan on fragile X. And we succeeded in 
adding fragile X to the list of disorders eligible for medical research 
projects under the Department of Defense's Peer Reviewed Medical 
Research Program.
  These accomplishments have had a significant impact on the fragile X 
community, but I assure you that this is only the beginning of our very 
promising journey. This year the Fragile X Caucus will work with other 
Members of Congress to push the NIH research plan on fragile X syndrome 
and associated disorders and will urge Congress to continue funding 
translational research that shows significant promise of a safe and 
effective treatment for this disorder. We will request that the 
Department of Defense expand the Peer Reviewed Medical Research Program 
to include fragile X-associated disorders in the eligible research 
topics for their fiscal year 2011. And we will advocate for continued 
support to grow the National Fragile X Public Health Initiative and the 
Fragile X Clinical and Research Consortium in order to expand to 
geographically underserved regions.
  I commend the ongoing research being conducted in drug therapy, and 
we hope that it will lead to successes. We must continue to focus on 
efforts to enhance the lives of these families who are blessed with a 
fragile X child. As the only Member of Congress who has a child with 
fragile X syndrome, I understand the challenges that many families face 
who experience this condition. For our family, fragile X has become a 
lifelong labor of love and daily blessings. Every day we thank God for 
our son, Livingston. My family's commitment to these courageous 
individuals is that we will work tirelessly to increase awareness of 
this genetic disorder.

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