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A country united: Tourette Syndrome community says yes to bill H.R. 3760

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 36 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 — 83 percent of those who have weighed in about it have said, “YES! We want and need this legislation.”

We want 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 and then head to POPVOX to voice your opinion and make this YOUR legislation!

lafaymom in Pennsylvania’s 10th District says … “I knew throughout my son’s life he was not a normal, healthy child but because of the lack of education of the doctors, teachers, and therapist who were not trained in Tourette’s Syndrome my son did not receive his diagnosis in a timely manner. When he turned 10 years old, his tics, and vocalizations became so severe that our Pediatrician finally gave us the diagnosis of T.S. after consultation with a Neurologist. His childhood was filled with sorrow and confusion; this led to chronic depression along with many other problems associated with T.S. While visiting my Son’s Neurologist what changed our life was a 3×5 index card with the phone number of our PA-Tourette Syndrome Association. They transformed our family. If nothing is done patients and families will face situations that will scar them for a lifetime if the appropriate intervention is not available. My Son is now 32 and he struggles daily, we spent 10 years trying to get a diagnosis and then had to join a group Law-Suit to get the education he was due. Please we need help, don’t let another child go through this when it can be avoided. We owe it to the community to support this Bill – H.R. 3760.”


MichaelHaluski in North Carolina’s 8th District says …
“I have personally observed the debilitating effects of Tourettes on my granddaughter. Until you have a little 7 year old sit in your lap, look you in the eye, and tell you she wants to be normal like everyone else you can’t understand. She has started feeling the effects of bullying brought on because she is different. We can make a difference in the lives of children such as my granddaughter. Just so you know, her name is Jordan. She was diagnosed with Tourettes about 4 years back. She does her best to control her Tourettes when in public because she knows she is different. I strongly urge you to support HR 3760.”


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.”


IleneApplebaum in Pennsylvania’s 13th District says …
“I was diagnosed with TS when I was 11 yrs of age. I was picked on not by only my peers but some teachers, as well. Now at 55, I have pain issues that another person without TS might not have.. I continue taking medication, better meds than before. But wouldn’t it be amazing if more academic research for TS could be explored so our educators of today could know more so our children did not suffer.”


mmbhaya in New York’s 26th District says ..
. “I have grown up with a close family friend who has been diagnosed with Tourettes Syndrome. She is an incredibly smart and caring girl who loves animals and organizing parties. However, I have seen how the effects of TS have impacted both her life and the lives of her family and friends. I know it would mean so much to them and myself to know that work is being done toward the prevention and treatment of this disorder.”


Caroline8265 in North Carolina’s 2nd District says …
“My eight year old daughter has Tourette Syndrome. Prior to her being diagnosed, I had heard of TS but didn’t know anything about it. Trust and believe when I say that I did an extensive amount of research once we received the diagnosis. Thankfully, we had a wonderful pediatric neurologist, Dr. Robert Greenwood of UNC Chapel Hill Hospital who talked with us for hours regarding this when he made the diagnosis. He gave us some literature to get us started and pointed us in the right direction in further researching this. Next, after I gathered the information that I had, my husband and I went to my daughters school with this to advise them of her diagnosis. The principal had only ever had one other student with TS in all her years as an educator and to date, none of her teachers have had a student with this so we are having to educate her teachers yearly on this. More needs to be done to make parents, educators, physicians and others aware of what TS is, how to recognize it, diagnose, treat and educate those with TS. Please pass this legislation.”


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.”


Jakobsladder in Illinois’s 18th District says …
“Tourette’s is an extremely debilitating disease. My 9yr old son has struggled with uncontrollable, involuntary movements for the last 3 years. The anxiety, anxiousness and lack of focus that are associated with TS make every day learning a struggle. Image spending an entire week to learn 15 spelling words, or spending 2 hrs doing 10 math problems. Jakob is compassionate young man who I believe will be a product part of society, but he needs the help from this bill to get there. We are fortunate to live in a small school district with compassion, understanding teachers and administrators, but not everyone is that fortunate. I’m not asking for sympathy. I’m not trying to enable my son. I’m asking for awareness to an illness that has gone unnoticed and misunderstood for the last century.”


Tim56 in New Jersey’s 11th District says …
“I have volunteered since 1995 with the NJ Center for Tourette Syndrome. I’ve reached out to your office several times for support but have not heard back from you or your staff. I’ll call your office in Washington. We need your support!”


54321 in New Jersey’s 3rd District says …
“New Jersey has changed the face of TS research, education and support through partnerships and collaborations. We need to fund research to help find a cure for TS. TS affects 1 in ever 100 people. NJ is in the forefront of this research. Please support this bill.”


ddavaro in Pennsylvania’s 7th District says … 
I am a 34 year old woman, who lives each day with Tourettes Syndrome and the effects that it has on my body. Currently there are no treatments for this Neurological Disorder, therefore I take 3 medications, which are prescribed off label to me to try to control the tics, in order to work as a functioning professional. In October I lost my Job of nearly 5 years due to the devastating OCD side effect that coincide with Tourettes and have plagued me since I was diagnosed @ the age of 13. Anorexia and Bulimia. These Eating Disorders, although secondary OCD behaviors that have nearly killed me. Due to the lack of Support and Opposed funding for research, Tourettes has wreaked havoc in my personal life since I was a young child. Aside from living with the daily dysfunction, I also do not qualify for any affordable Major Medical Insurance Policies because of this Pre-existing Condition. I beg of you not to take this matter lightly when considering H.R 3760: Collaborative Academic Research Efforts for Tourette Syndrome Act of 2011. Please SUPPORT this Act!!!”


VAeric in Virginia’s 11th District says …
I was diagnosed in my adulthood following my oldest daughter’s diagnosis. Shortly thereafter my younger daughter was also diagnosed with TS. Refusing to be victims my oldest daughter has become an advocate through her participation as a Youth Ambassador at last year’s national TS conference in Washington, DC. She educates school children about what it means to have TS and how the tics and vocal sounds are uncontrollable. Even as confident and strong as she is regarding her condition she is still a target for comments and abuse by ignorant kids and adults alike. We always want the best for our children and the possiblity of sparing others from what we, as a family, have experienced would be the greatest of gifts.”


ValerieMillsDaly in Michigan’s 1st District says …
“I have become more aware over the past few years just how widespread this problem is. What triggered this was my own granddaughter’s diagnosis of Tourette, and now my grandson is showing signs of this disorder as well. I hope that passage of this act will expand not only research in this area, but awareness in the wider community of this syndrome. Thank you for considering support of H. R. 3760.”


dbpeds in Washington’s 7th District says …
“Tourette syndrome affects about 1 in every 100 children. In the 13 years since I began medical practice as a pediatrician, I have witnessed a huge shift in the population of children who present with problems related to Tourette syndrome. I believe this growth is due to greater awareness of this medical, neurological disorder. Despite the growth in diagnosis, its causes are largely unknown and its treatments are few.”


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.”


BJRay in Florida’s 24th 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 a son with Tourette Syndrome. Tourette Syndrome affects every area of his life; research is so critical as this is a hereditary disorder. Please support this!”


DeborahMcCormackTerry in Ohio’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…my great nephew has Tourette’s Syndrome, and I am a special ed. Teacher.”


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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