Breaking: Rett Syndrome Now Eligible for $278 Million in Federal Research Dollars

December 30, 2015

In January of 2015, RSO ( undertook an ambitious advocacy campaign on Capitol Hill with the intent of enabling Rett syndrome research to be funded by the Department of Defense (DOD). We first told you about this exciting endeavor in this blog post.

Through the strategic help of RSO board member Scott Parven, the innumerable families who sent in letters to members of Congress, and the dogged persistence of RSO’s Chief Science Officer, Dr. Steve Kaminsky -- the campaign was a success.  On December 18, 2015, President Obama signed into law a bill designating Rett syndrome as one of only 40 areas of study eligible for up to $278 million of funds under the DOD’s peer-reviewed medical research program.

Rett syndrome is eligible for funding because of the relevance of Rett research to war-fighters and veterans suffering from traumatic brain injury (TBI).  Both Rett syndrome and TBI have associated synaptic dysfunction.  In searching for treatments for Rett syndrome, researchers may uncover a host of pathways to treat the TBI epidemic and other neurological dysfunction that inflict veterans—including as Parkinson’s Disease and Alzheimer’s.

A very special and heartfelt thanks goes out to Senators Thad Cochran and Dick Durbin and the many Representatives and Senators who supported this effort.

What does this mean for the research community?  Researchers investigating compounds to treat Rett syndrome can fund their research under this program.

What does this mean for families?  Lawmakers have recognized the importance Rett syndrome research plays in gaining a better understanding of many neurologic disorders. Most importantly, this appropriation provides significant new federal research dollars for the study of treatments for Rett.

This is a time for all of us to rejoice at this new pool of funding available to help advance near-term treatments and ultimately a cure for our girls and women with Rett Syndrome. Over the next few months we will be working with all Rett syndrome researchers to maximize the use of these new funds.

But this is not a time to slow down. As a community, this is the very time to expand our efforts to advance our research programs.

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