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Lawmakers Call For Increased Down Syndrome Research

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A set of new bills introduced in Congress would establish first-ever centers for studying Down syndrome and boost research of the chromosomal disorder, a move supporters say will correct a funding inequity.

Since 2000, the Children’s Health Act has specifically authorized research for several conditions including autism, epilepsy, asthma and fragile X syndrome, but not Down syndrome.

Now, two bills introduced late last week by U.S. Rep. Cathy McMorris Rodgers, R-Wash., could change that.

The legislation would allocate $6 million annually for the National Institutes of Health to establish six centers of excellence for Down syndrome research.

Moreover, the federal agency would be required to create and update a Down syndrome research plan every five years and the bills call for the establishment of three research databases.

The move is an effort to help level the playing field when it comes to the allocation of research dollars. Historically, advocates say that funding for Down syndrome has lagged behind that of other conditions.

Last year, the National Institutes of Health tagged $28 million to study Down syndrome, $6 million of which came from economic stimulus efforts.

At the same time, more than three times as much money went toward cystic fibrosis research, even though that condition affects just 30,000 Americans compared to some 400,000 with Down syndrome.

For McMorris Rodgers, increasing the federal focus on Down syndrome has special meaning, as her son Cole, 4, has the developmental disorder.

“I’m quite concerned that so many of the researchers in the Down syndrome field have difficulty getting funded,” McMorris Rodgers told The New York Times in an article published just last week. “My fear is that for some, they believe that it’s been taken care of through prenatal diagnosis.”

It’s unclear when the legislation may be considered in Congress. But the bills do have bipartisan support — a key to getting legislation passed in recent times — with co-sponsors Rep. Chris Van Hollen, D-Md., and Rep. Pete Sessions, R-Texas, on board.

Those backing the measures say some senators have expressed interest in presenting similar legislation before that body, though nothing has been introduced yet.

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