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I wonder a lot of things about Tourette Syndrome

Ever look at this map and wonder??

I wonder why the East Coast appears to have such a higher incidence of TS. Is it because most of the major research centers working on TS are in the east??

I wonder about how the data to make this map was collected. Seriously, WHO is keeping track of the number of people with TS since when I go looking for statistics I find conflicting information on EVERYTHING.

I wonder about a lot of things Tourette’s-related and with most there is not much I can do to help find the answers. But there may be a way to help: the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013 is a bill that has been referred to Congressional committee and it could use our help.

The Collaborative Academic Research Efforts for Tourette Syndrome Act of 2013  will 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. It:

  • 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.”

Right now, the bill needs help — a lot of it. Helping is simple: Just follow this link, click “support” and the site will help you send a letter to your congressperson asking them to support the bill. It’s easy. But right now, the bill has next to no chance of making it through Congress, but if enough of us support this and get our friends and family to support it, it could happen.

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0 Comments

  1. Thank you for the support Peggy! But it actually looks like your Representative is Adrian Smith. You definitely should contact his office to see if he has co-sponsored the bill. Right now there are only 12 co-sponsors among 435 Representatives. That’s just not going to get it done. We all need to do our part to get EVERY Representative signed onto this so they have no choice but to pass it!

    • Peggy, thanks for the response! You should reach out to his office to see if he has signed on as a co-sponsor of this bill. If not, that’s what he needs to do. The only way this bill gets passed is if there are enough co-sponsors to get the whole House’s attention.

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