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Get the House and Senate bills on Tourette Syndrome passed

Get the House and Senate bills on Tourette Syndrome passed

Closed — 77 supporters Verified

Final supporters

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Melissa P.
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Aida
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Camden
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Someone
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nora m.
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carole s.
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Wendy L.
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Ruth H.
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Caitlin J.
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Nikki R.
+67 more
Started by Anonymous 14 years, 3 months ago
The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to announce the introduction of federal legislation for Tourette Syndrome by U.S. Senator Robert Menendez (D-NJ) and U.S. Congressman Albio Sires (D-NJ13). The Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2011, with bill number S. 2321 in the Senate and H.R. 3760 in the House of Representatives, would amend the Public Health Service Act to provide for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health (NIH) with respect to Tourette Syndrome -- a neurological disorder that affects 1 in 100 people. The bill seeks to expand and intensify data collection on TS to improve information on the prevalence of the disease, while also establishing Centers of Excellence to undertake extensive research into the causes, treatments, diagnosis and preventions of TS. NJCTS, the nation’s first center of excellence for TS, was established in 2004. It is the only agency in the New Jersey – and one that leads the nation – that supports the needs of children and families dealing with TS, an often misunderstood and misdiagnosed inherited neurological disorder characterized by repeated involuntary movements and uncontrollable vocal sounds called tics. The next step for Senator Menendez in his quest to bring S. 2321 into law is to seek co-sponsors for the bill in the Senate. In the House of Representatives, bill H.R. 3760 already has 37 co-sponsors. To register support for these bills, just sign your name to this peititon. Then, please visit POPVOX – which bridges the gap between the input the public wants to provide and the information Members of Congress want and need to receive – at https://www.popvox.com/bills/us/112/s2321 and https://www.popvox.com/bills/us/112/hr3760. Thank you!

Updates

May 18, 2012

I was just reading through some of the personal notes people left and it hits me how many families are basically just white knuckling it through the medical system without any real institutional support. It is exhausting to think about but honestly it just makes me want to push harder because these kids definitely deserve a better path forward than the one we have now.

May 18, 2012

I really never thought this would gain this much steam so quickly honestly but here we are and it just feels surreal how many people care about this research. I have been reading through the comments all morning while drinking way too much coffee and my eyes are getting a bit blurry honestly but it is so cool to see this momentum building for the bills.

5 Comments

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carole shields
12 years ago Featured

my son is 32 and struggling still since age of 2...it is a dreadful disorder and we need help...we cant do this alone...please help us...

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Mike Hassan
14 years ago Featured

FINALLY. been waiting for someone to actually take some action on this. about time the NIH pays real attention to us.

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Jennifer Lund
14 years ago Featured

My daughter has had tics since she was four and the lack of research is just shocking. We need better answers for these kids.

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Sarah Obi
14 years ago Featured

my 10 year old gets teased constantly at school and its breaking my heart... people need to understand this isnt just some joke... please get this passed

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David Gupta
14 years ago Featured

its a nightmare trying to find a doctor who knows anything about this in my area. hope this money goes to actual help and not just more talk.

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