Summary

1/3/2013--Introduced.Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 - Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH)... Read More

Status

This bill was introduced on Jan 3, 2013, in a previous session of Congress, but was not passed.

Bill Text

A BILL

To 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 with respect to Tourette syndrome.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ``Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013''.

SEC. 2. PROGRAMS OF THE NATIONAL INSTITUTES OF HEALTH RELATING TO TOURETTE SYNDROME.

Part B of title IV of the Public Health Service Act is amended by inserting after section 409J (42 U.S.C. 284q) the following:

``SEC. 409K. EXPANSION, INTENSIFICATION, AND COORDINATION OF ACTIVITIES WITH RESPECT TO TOURETTE SYNDROME.

``(a) In General.--The Secretary, acting through the Director of NIH, shall expand, intensify, and coordinate the programs and activities of the National Institutes of Health with respect to Tourette syndrome. ``(b) Data Collection.-- ``(1) System.--In carrying out subsection (a), the Secretary shall develop a system to collect data on Tourette syndrome, including epidemiologic information with respect to the incidence and prevalence of Tourette syndrome in the United States. ``(2) Broad and narrow definitions.--The data collection system under paragraph (1) shall provide for the collection of primary data on Tourette syndrome, including related data on the various conditions known to be comorbid with Tourette syndrome. ``(3) Collection by population and geographical region.-- The data collection system under paragraph (1) shall provide for the collection of data on the availability of medical...

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Sentiment Map

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Nation

248 Supporting
21 Opposing
92% 8%

State: CA

13 Supporting
0 Opposing
100% 0%

District: 1st

0 Supporting
0 Opposing
0% 0%

Popularity Trend

Organizations Supporting

It is vital to the TS community, of which 1 in 100 children and adults are members. New Jersey leads the nation in TS programs, services and research, and its legislators should get back on board with this legislation, which originally was introduced a year ago. The New Jersey Center for Tourette Syndrome, the first Center of Excellence for TS in the nation, firmly supports this bill and encourages everyone affected -- either directly or indirectly -- to do so as well.

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Awareness. Acceptance. Action. Advocacy. All needed when it comes to informing people about Tourette Syndrome at the national, regional, state and local level. Speak Out for Tourette Syndrome, despite being just a Facebook page, champions this cause for every one of the children and adults affected by Tourette Syndrome and believes that getting federal legislation passed is the best route toward a cure and a better future for all.

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Organizations Opposing

This bill calls for the NIH to direct disease-specific research. We would prefer to let scientists determine the best course of action with their research, and to win grants based on exemplary, peer-reviewed applications. Furthermore, the directives in this bill would restrict funds for investigator-initiated research and would represent Congressional micromanagement of NIH-funded research.

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Users Supporting

I support H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because my 6 year old son was just diagnosed with this disorder and as a Mother I would like to know we are doing everything possible to help all children/adults that have to face the long road of unknowns about the disorder. My son is a smart, sweet boy who doesn't understand why he can not fall asleep at night anymore and wonders why he can not stop twitching and grunting. Anything to help please.....

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NJ
4
LisaMarieE
NJ-4
1 year ago

I support H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because...my 16 year old son has been dealing with tics since age 3 and was diagnosed with TS when he was 8. There is much to learn about TS. It keeps my son from feeling the confidence that so many of his peers do in social situations, in school, in speaking to others and from fully engaging in all that life offers an otherwise typical teenager like him. TS is not life threatening, thank God, so it can tend to get swept under the rug. Our children are the most susceptible to feelings of inadequacy and potentially self harm. As a parent of a child with TS, ADHD, some mild anxiety, some depression and recently diagnosed with some learning disabilities, these kids deserve the same level of interest and funding that other illnesses, conditions or disorders get. Please support this Bill. Thank you.

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NJ
7
anendtoTS
NJ-7
1 year ago

I support H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because... Tourette takes over your life. No medicine helps me, the surgery, DBS, in not approved, and insurance is free to take counceling away at the drop of a hat and leave us standing there holding the bag. A bag that's too heavy to hold and a burdon thats to big to bare. Please help us. Please save us.

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PA
4
ticcer
PA-4
1 year ago

I support H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because... I am a mother with a son who has tourettes. He's only 6 years old - he's a sweet, bright boy who loves to read and play soccer and wants to grow up to be an astronaut and a ninja (in that order). We know so little about tourettes, about why he has it, about how to help him, about where to go for support, and about effective treatments to calm the tics without dulling his mind and senses. We need more help and research and information. Please pass this bill - for him, for all the kids like him and for the families who love them. Thank you!

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NJ
10
cmartinez3
NJ-10
1 year ago

I support H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because... My husband works with people affected by Tourette Syndrome on a daily basis. People with TS are no different than those who have OCD, ADHD, anxiety, autism and Asperger's syndrome, and yet there are many provisions for such disorders. Tourette's should be in that group, too. Please support this bill.

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NJ
7
TJW82
NJ-7
1 year ago

I support H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because, as a member of the staff of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for the past two years, I have seen first hand how many families are seriously affected financially, emotionally, physically and spiritually by Tourette Syndrome. This is a serious neurological disorder that affects 1 in 100 children, teenagers and adults. It doesn't go away. There is no cure. This bill seeks to change all of that. And the money to fund it already is appropriated to the NIH. How is this not a win-win scenario for all involved? Please take a moment to think about the 1 in 100 number and how, not long ago, autism was 1 in 150. Yet there was funding and legislation for that. Please consider co-sponsoring this bill. Only 13 out of your 435 colleagues have done so. That's not nearly enough. So please, join us in supporting this wonderful bill that CAN and WILL help people.

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PA
15
JMW77
PA-15
1 year ago

Users Opposing

I oppose H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because... First, The Constitution does not define this as a responsibility of the Federal Government. Tenth Amendment says “the powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved to the States respectively, or to the people.” Second, at a time when the government is spending soo much money they cannot balance or pass a budget, we chould not be considering spending another penny.

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IL
2
theitperson
IL-2
1 year ago

I oppose H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because...while I understand that many illnesses and syndromes are "underserved" in our healthcare situation...First, The Constitution does not define this as a responsibility of the Federal Government. Tenth Amendment says “the powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved to the States respectively, or to the people.” Second, at a time when the government is spending too much money, they cannot balance or pass a budget, we should not be considering spending another penny.

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NJ
2
DameYankee
NJ-2
1 year ago

I oppose H.R. 146: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 because this is just another wasteful and intrusive expansion of the government by the Communists. Private corporations perform better research and get results from the research faster than the government ever will. Please oppose this bill. Respectfully,

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OH
8
SlatsTheAmerican
OH-8
1 year ago

I oppose H.R. 146 ("To amend the Public Health Service Act to provide for the expansion, intensification, and coordination") because... First, The Constitution does not define this as a responsibility of the Federal Government. Tenth Amendment says “the powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved to the States respectively, or to the people.” Second, at a time when the government is spending soo much money they cannot balance or pass a budget, we chould not be considering spending another penny.

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KY
4
Anonymous306048
KY-4
2 years ago

Bill Summary

1/3/2013--Introduced.Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 - Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH) to expand, intensify, and coordinate NIH programs and activities regarding Tourette syndrome. Requires the Director to develop a system to collect data on Tourette syndrome, including epidemiological information regarding its incidence and prevalence in the United States, primary data, and data on the availability of medical and social services for individuals with Tourette syndrome and their families. Requires the Director to award grants and contracts to public or nonprofit private entities to pay costs of planning, establishing, improving, and providing basic operating support for between four and six centers of excellence in different regions of the United States to conduct basic and clinical research on Tourette syndrome. Requires the Secretary to designate a portion of the amounts made available to carry out NIH programs and activities for a fiscal year to carry out programs and activities with respect to Tourette syndrome.

H.R. 145The Central Idaho Economic Development and Recreation Act H.R. 147The Death Tax Repeal Act