Collaborative Partnerships for the Tourette Syndrome Community
I’m pleased to announce that the New Jersey Center for Tourette Syndrome is actively garnering support for the passage of a critical bill, the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2014 (H.R. 4221). The CARE Act represents an exciting opportunity for the entire TS community—calling on our government to stimulate research to increase understanding of and improve treatment for Tourette Syndrome. NJCTS is collaborating with the Tourette Syndrome Association to ensure this initiative receives sponsorship across the country.
Originally introduced by NJ Congressman Albio Sires in December 2011, with a Companion Bill introduced in the Senate by NJ Senator Robert Menendez shortly thereafter, the CARE Act amends the Public Health Service Act for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health with respect to scientific and clinical research on Tourette Syndrome. The CARE Act does not authorize any new funding for TS, but rather reallocates existing funds towards new programs to more effectively research and collect data on TS.
The Act would require the NIH to award grants and contracts to academic, healthcare and other institutions to support the establishment of four to six Collaborative Tourette Syndrome Research Centers in different regions of the country. These centers will host high level, concerted, scientific and clinical research into TS and related disorders. Lastly, it would facilitate the collection of important data on various aspects of TS which can be used to provide a better understanding of the disorder, and assist with the development of programs and strategies aimed at advancing the TS research agenda.
The push to forward the Collaborative Academic Research Efforts for Tourette Syndrome is a important turning point for the TS community and I’m pleased that the national Tourette Syndrome Association has joined with the New Jersey Center for Tourette Syndrome on this issue. Together, we are urging citizens to write to their local elected officials asking them to support H.R. 4221. For more information, please visit www.njcts.org.
Faith W. Rice
Executive Director, New Jersey Center for Tourette Syndrome & Associated Disorders, Inc .