March 05, 2010

Fragile X Week

This week was National Fragile X Advocacy Week in DC. Congressman Harper's son, Livingston, has Fragile X. On Wednesday morning, Congressman Harper took a group of 150 people on the House Floor before they began their rounds of lobbying Congress on behalf of raising Fragile X awareness. He gave them an interesting history lesson, encouraged them, and thanked them for their efforts. Many people do not know what Fragile X is, even though is it the most common cause of inherited mental impairment. It can range from learning disabilities to more severe cognitive or intellectual disabilities. To put it in a context that most folks are more familiar with, FXS is the most common known cause of autism or "autistic-like" behaviors.

I had several opportunities to visit with these families and their kids that were in town. They told me wonderful stories, sad stories, and funny stories. All of them were so appreciative of Congressman Harper's efforts to secure appropriations for FXS research and for his involvement in the FXS Caucus. One lady told me, "We knew we needed star power to help Fragile X get the recognition it deserved, but we didn't know exactly what kind of star we needed...until Congressman Harper came along. He has been amazing." These are the moments to step back and be thankful for the ways that the Lord is using Congressman Harper and our office in DC.

Below is an excerpt and video from our latest eNewsletter.

NATIONAL FRAGILE X FOUNDATION ADVOCACY DAY
As many of you may know, my wife, Sidney, and I are blessed with a precious 20-year-old son, Livingston. Early in his life, we noticed that Livingston was not reaching developmental milestones as quickly as the other children his age. After almost two years of occupational therapy, speech therapy and many diagnostic tests, we were finally able to get a correct diagnosis of Fragile X Syndrome.

On Wednesday, over 150 Fragile X advocates, many of them parents of Fragile X children, visited Capitol Hill educating their Members of Congress on the potential for effective treatments, raising awareness for this disorder and sharing their personal stories. Below, you will find a video of a floor speech I delivered on the National Fragile X Foundation Advocacy Day.

To view this video, click here.
(Having trouble? Visit
www.youtube.com/CongressmanHarper)

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. I am committed to improving the health of children and adults across the country living with this disorder.

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