TSParentsOnline bloggers and participants rally around pending federal TS 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 one of its two online weblogs, TSParentsOnline – wants to let you know what people nationally have been saying about the bill and why it is so important, as well as encourage you to support it and spread the word! Please enjoy these testimonials from New Jersey constituents and then head to POPVOX to read other testimonials, voice your opinion and make this YOUR legislation!
devonalpert in New Jersey’s 3rd District says … “My son Devon Alpert was diagnosed with Tourette’s 3 years ago when he was 7. His symptoms started with eye blinking and quickly progressed to uncontrollable body movements and vocalizations. The body tics have been not only painful at times for Devon but are also embarrassing to him. Prior to his diagnosis Devon was extremely outgoing and the happiest child you would ever meet. While he has done his best to deal with his disorder, they have had many affects on his life as well as our families. The tics often make it nearly impossible to concentrate in school and have also brought out many anger issues with him. We have done everything we can to help him deal with this and treat him as normally as possible. The harsh reality is that this is a disorder that most people do not understand although it affects many more then I would have ever thought. In order to help Devon and others like him I would ask that you please pass this bill and help the many children throughout our country who have to deal with Tourette’s on a daily basis.”
tjk08 in New Jersey’s 12th District says … “I support H.R. 3760: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011. I am a Plainsboro resident, and have two daughters, ages 12 and 9, who are both affected by this misunderstood, isolating condition. Increased funding for research efforts are desperately needed to better understand the underlying causes and develop more effective treatments, as well as expanding educational and counseling services. Too many young children, adolescents, and adults are suffering from this disorder and its associated co-morbidities with inadequate support and treatment options available to them. Please help ensure that more funding is provided to make significant advances that will positively impact the lives of thousands of people.”
kidbid-TS in New Jersey’s 1st District says … “I support H.R. 3760 (“To amend the Public Health Service Act to provide for the expansion, intensification, and coordination”) because…My son has TS and daily life for him which we take for granted is a struggle. A bill like this will bring into his life, access to things that are not within his grasp right now. It is a very frustrating road I walk in trying to get the required help for my child, as all I hear mostly is “you dont qualify for this or that because you are not citizens or haven’t worked long enough”. So I support any bill that would make my son’s life richer and better.”
Cindying in New Jersey’s 3rd District says … “I support H.R. 3760 (“To amend the Public Health Service Act to provide for the expansion, intensification, and coordination”) because…I have been involved in TS research for years and the support of our legislators is what we need to get to the next level. There are more people in the nation that suffer from TS than anyone thinks. This research can help all of those that have TS.”
LeslieKowalski in New Jersey’s 12th District says … “I support H.R. 3760 (“To amend the Public Health Service Act to provide for the expansion, intensification, and coordination”) because as a parent of two children with Tourette Syndrome, I see the daily struggles of living with this disorder. My vibrant, amazing daughters deal with bodies and minds that betray them hundreds of times per day, leading to both emotional and physical pain. Anything that can be done to help children with this difficult and isolating disease would be a blessing. And, since so many related disorders (OCD, autism, etc) affect so many children, there would be a more widespread benefit as well.”
DD1546 in New Jersey’s 7th District says … “I support H.R. 3760 (“To amend the Public Health Service Act to provide for the expansion, intensification, and coordination”) because almost all of the major medical advances of the past half-century have come from NIH. Tourette sydrome does not get the attention it deserves and only NIH can assure high quality reserach in this area. I have a son with TS and have seen how hard it is to get coordinated treatment. Its simply that there are too few centers that deal with this disorder. We need to fix this now.”
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.