Monday, September 24, 2012

Good news from Rep Cathy McMorris Rodgers!

We at KIDS have a special relationship with Congresswoman Cathy McMorris-Rodgers, she is our advocate for our children in Washington. She founded the Congressional Down Syndrome Caucus for this purpose, and we support her efforts.

Here is her latest accomplishment, which will advance research which can benefit those with T21.


I’m excited to share some great news with you: Last week , the House passed my bill with Rep. Lois Capps (D-CA) to advance research into pediatric disorders such as Down syndrome and spinal muscular atrophy (SMA). Our bill – HR 6163, the National Pediatric Research Network Act (NPRNA) - will create research networks focused on pediatric diseases, giving new hope to millions of Americans who suffer from these conditions and their families.

As a mom whose child has special needs, I know that, far too often, research into pediatric disorders lags behind research into other medical conditions. For example, while children represent about 20 percent of the U.S. population, the National Institutes of Health (NIH) uses only about 5 percent of its extramural funds on pediatric research. In addition, studies have shown that one of the most effective ways to increase collaboration for medical discovery is through organized research networks. Unfortunately, since pediatric diseases can be relatively rare in certain communities, research is often limited to single-site research studies, which can be inefficient in finding potential treatments and cures.

That’s why our bill is so important: It will take pediatric research to the next level by authorizing NIH to establish up to 20 pediatric research networks, enhancing collaboration among medical researchers, and giving new hope for medical breakthroughs.

I want to thank my friends in the disabilities community for all their work to get my bill passed through the House. Now we need the Senate to join us and take action soon.

To learn more about my bill, click here .

To watch my House floor speech advocating for the bill, please click here .

Thank you for your interest in this issue. As always, feel free to contact me about any issue you care about.

Warm regards,