Father of two daughters with Tourette Syndrome and teenage boy with TS believe all people with Tourette should support this pending federal legislation
Since it was introduced by U.S. Congressman Albio Sires (D-NJ13) on Dec. 20, 2011, bill H.R. 3760 — the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011 — has gained a lot of national attention.
It now has 37 Congressional co-sponsors, is pending review by a Congressional subcommittee and is being voted on and debated by people from all over the nation on multiple legislative websites, including POPVOX.
On POPVOX, which bridges the gap between the input the public wants to provide and the information members of Congress want and need to receive, H.R. 3760 has garnered overwhelming support — 85 percent of those who have weighed in about it have said, “YES! We want and need this legislation.”
The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) – through its two online weblogs, TSParentsOnline and Teens4TS – wants to encourage everyone to support this bill and spread the word! Please enjoy these testimonials from a New Jersey father, whose two daughters have Tourette Syndrome, and a New Jersey teenager, who is one of the most frequent contributors to NJCTS’ highly read Teens4TS blog.
TimK says … “As a father of two children with TS, I am reaching out to other parents of children with TS to help support a first-of-its kind legislation that 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. This legislation seeks to establish regional centers of excellence across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders. As of today, 37 Congressmen have co-sponsored this bill. I am asking you to help increase its support by reaching out to your member of Congress, and asking your friends and family here in New Jersey and around the country to do the same. Let’s get the word out and pass this legislation!”
HarryK says … “Right now, the bill is in the beginning stages of a piece of legislation’s ‘life cycle.’ Before any bill goes into debate by Congress and the Senate, they first are checked out by several committees. These committees investigate, revise and deliberate them before any further action is taken. Unfortunately, the vast majority of resolutions and bills that are in this stage never make it out of committee. It is for this reason that we need all the help and support we can get in order to have this bill written into law. I’ve already voiced my opinion and contacted our state representatives. Now you guys have to do the same!”
A simple and quick way to make your voice heard is to use the POPVOX system, which automatically allows you to write to your member of Congress in support of this bill. Here are five simple steps to take:
- Click here to head to the TS bill’s site on POPVOX.
- Then, once you’re on the POPVOX page, click SUPPORT.
- You then will be taken to a second screen “SEND A LETTER TO CONGRESS,” in which you have the option of telling your member of Congress a personal story or why you think this legislation is important. If you click “yes,” add the statement you wish to share. If you click “no,” you will be taken directly to the next screen.
- Next, “REGISTER YOUR POSITION.” Here you enter your e-mail address, a screen name and password. An e-mail will be then sent to that address asking you to finish creating your account. That e-mail will include a link.
- When you click on that final link, you will be taken to a screen to fill in information about yourself for your member of Congress (name, address, phone number). Your member of Congress will then receive an e-mail stating that you support the legislation (and will include the personal statement, if you wrote one).
As Congressman Sires stated … “It is my hope that through this legislation, we can grasp a better understanding of Tourette Syndrome and in turn, help enhance the lives of so many.”
And once again, in the words of HarryK from the Teens4TS blog … “It’s certainly great to know that we have people up in Congress on our side, and it makes it a whole lot better to have support for something that we believe in. The passing of this bill into law would be a huge victory for the TS community and those affected by the syndrome everywhere. Spread the word now and let your voice be heard!”
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.