As a scientist and father of 2 kids with Tourette Syndrome, I’m often pretty frustrated with the state of our understanding of the causes of Tourette and its frequency within the general population, and with the limited treatment options available.
Yes, we have undoubtedly made significant inroads (awareness and understanding of TS has improved, the introduction of habit reversal therapy as an effective alternative/complement to pharmacotherapy, and research efforts such as the ongoing work of the NJCTS Cell/DNA Sharing Repository which promises continued identification of genes associated with TS and the hope of more effective therapies).
But we need to do more to collect data that identifies the number of affected people more accurately and the range of co-morbid conditions associated with TS, and accelerate research efforts to better characterize the underlying biology. Only then, armed with this more complete understanding of Tourette, will we be in a position to identify improved therapies.
Additionally, many kids and families suffer without a diagnosis for years, often because of limited awareness of the disorder by professionals in both the medical and education communities – increased outreach to elevate awareness and understanding of TS, akin to services provided by the NJCTS, are critically needed throughout the country to ensure that the stigma associated with the disorder burdens fewer children and adults.
As members of the TS community, we have an opportunity to more quickly attain our goals of better treatment (or cure!!) and to lift the stigma of TS for our affected loved ones. PLEASE go to POPVOX and write to your local congressman/congresswoman and urge them to support H.R. 146: the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2013. (see ).
This bill proposes to expand, intensify, and coordinate the programs and activities of the NIH with respect to Tourette syndrome, providing funds to create centers of excellence that will be charged with expanding research efforts that include investigations into the cause, diagnosis, early detection, prevention, control, and treatment of TS.
This passage of this bill will only be successful if your voice is heard. Please encourage your family and friends around the country to also speak on your behalf to their members of Congress. Go to the POPVOX link to send a message to your local representative, then distribute that link to others. This has to go viral.