The Other Side of the Tracks

March 12, 2013

by Mark Dunning 

Just a quick post today to give you an update on another important aspect of Usher syndrome research: Funding. We have been working to try to increase federal funding for Usher syndrome research and have gotten some traction in Washington D.C. over the last couple of weeks. 

On Wednesday, March 13th, Susie Trotochaud of Georgia, a mom with Usher twins, will testify before the House Labor Health and Human Services sub-committee on behalf of the Coalition for Usher Syndrome Research and Usher families everywhere. Susie will be asking for an increase in funding for Usher syndrome research that would put Usher syndrome on a par with other similarly rare diseases. The federal funding of diseases such as ALS, Huntington’s, and Duchenne Muscular Dystrophy has averaged around $50M annually per disease and has produced wonderful results. We believe that investment in those diseases should continue and are excited by the possibility of Usher syndrome joining their ranks. 

We will be meeting with the National Institute of Deafness and Communication Disorders (NIDCD) and the National Eye Institute (NEI) in the next week as well. Our hope is to work with these institutes to develop a plan to increase Usher syndrome research ten-fold over the next five years.

Finally, we are working with several very thoughtful and kind members of Congress to develop language that ensures that funding is available for Usher syndrome research. And that’s where you come in. This step in the process will benefit greatly from the support of congressional delegates from both sides of the aisle and from as many states as possible. So if you are willing to write your congressperson and/or willing to visit his/her office, please let me know. We may be asking for your help over the next weeks and months to push this through. 

If it all works out, we could be looking at a 4-10x increase in federal Usher syndrome funding support. That means 4 to 10 times as many projects, 4 to 10 times as many researchers, and a corresponding increase in the rate of discovery.

My heart beats faster just thinking about it. So watch this space and get your pens ready. We’ll need everyone’s help if we want this to happen.

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