Hey guys, my last few posts (here and here) have been about the bills in both the House of Representatives and Senate in regard to the expansion in funding for research and various programs involving Tourette Syndrome.
The Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2011 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 with respect to TS.
The New Jersey Center for Tourette Syndrome has recently created an iPetition on iPetitions.com in order to gain support for the bills. Please visit the site here and sign in at the bottom with either an iPetition account that you can create for free, or with your Facebook login.
Share the bills’ iPetition link on your Facebook, by e-mail, on Twitter and with whatever other social networks you might use. Once again, it’s extremely important to spread the word about these bills in order to garner more support in the area of funding for TS programs and research in the future.
Here’s the actual link: http://www.ipetitions.com/petition/tourettesyndrome/
Thanks for all the help!
Hi everyone, I just wanted to share a little note that shows how important it is to support H.R. 3760, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011. I posted the following short letter to the POPVOX website on May 14:
Dear Rep. Allyson Schwartz:
I am an artist with Tourette Syndrome, and I have started a performance troupe that takes the tics and twitches of TS and uses them as a foundation for choreography. In this way, we are challenging people’s preconceived notions about what it means to have a disability. Additionally, we incorporate a neuroscientist during our presentations who gives a scientific lecture on Tourette. We are combining art with science to create a powerful message. I believe this work is important and needs to be shared with as many people as possible. We need support from people like you so there can be funding for projects like these. This is especially critical to the youth who suffer with TS because they are bullied and misunderstood. My performance project is one that educates and inspires tolerance and appreciation for those who are different. Our hope is that you find our work compelling and worthy of further exploration and support. Thank you. You can find us at www.bandofartists.org.
Pennsylvania’s 13th District
The very next day, the following message appeared underneath it on POPVOX:
This letter was delivered to Rep. Allyson Schwartz [D, PA-13] on 5/15/12.
See? Your letters to Congress ARE heard, and our representatives ARE interested in hearing what we have to say about Tourette Syndrome. The more letters we send in, the more likely they are to co-sponsor this bill and get it sent into the House of Representatives for a vote. Log on to POPVOX today and share your opinion!
Hey guys! As per one of my previous posts found here, a companion Tourette Syndrome bill — S. 2321 — has been introduced to the U.S. Senate, expanding upon H.R. 3760, which was introduced by Congressman Albio Sires (D-NJ13) in December 2011.
This is another huge step in getting the legislation passed, as it will help garner more support within the TS community — and even outside of it as well. S. 2321 was introduced by Senator Robert Menendez (D-NJ) and seeks to amend the Public Health Service Act, just like H.R. 3760. In fact, much of the language of the bills is similar.
If the bill is successful in passing, the programs and activities of the National Institutes of Health in respect to TS will see increased funding so that they can be expanded and intensified.
The bill is still making its way through the democratic process; though it is a long and arduous one, the many benefits that the TS community will reap from the bill being passed are immense.
Please support the bill and the companion version here on POPVOX. It’s extremely important to spread the word to others. Remember, our elected officials are here to listen to US, the citizens of the regions they represent. Make sure that you are getting the word out, and hopefully we will be able to see some positive results once the bill is voted upon Thanks!
Hey guys, I thought I’d give you an update on my previous post. As a recap, the amendment on the Public Service Health Act would establish regional centers across the country to conduct research into the cause, diagnosis, early detection, prevention, control and treatment of Tourette Syndrome and associated disorders.
Here’s the good news: The next vote for bill H.R. 3760, the Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011, will come in the House of Representatives if it successfully makes it out of committee.
Here’s the bad news: Only 8 percent of bills actually make it out of committee and into the House.
So what can you do? You can continue calling your representatives by following the instructions on my previous post! The more support that this bill gets, the more likely it is that it is passed! Thanks for all the help, and I’ll be sure to update you guys as more news on the bill comes in.
Hey guys, as some of you may know, there is currently legislation in Congress that would amend the Public Health Service Act (introduced by New Jersey Congressman Albio Sires) with the goal of establishing 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.
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: Continue reading
The media in all its guises uses the word Tourettes to reference any use of bad language. The inability to control sounds and movements is seen as humorous and indeed with Christmas approaching the books ‘Pets with Tourettes’ has put in a reappearance along with a new ‘More Pets with Tourettes’.
This total lack of understanding of a condition which is debilitating, socially excluding and at times extremely painful shows a lack of intellectual rigor and indeed journalistic laziness. This situation could not happen to people who are in wheelchairs or with a whole host of other conditions.
By signing this petition you will not only be helping us to approach publishers and journalists to change their ways but, if enough people sign, we may be able to start a petition to government to protect people living with Tourette Syndrome to the degree they deserve.
Tourette Syndrome isn’t a joke. Stop making it one. Sign your name here.