The Tourette Association of America is looking for help with pending research legislation at a national level as well as more inclusion of Tourette Syndrome in a potential reauthorization of the Individuals with Disabilities Education Act (IDEA). Please follow the links at the bottom of each announcement to get your elected officials to participate in a very important briefing on the research legislation and so they understand how Tourette Syndrome severely impacts students with this disability.
Dear Tourette Association Members, Family and Friends,
The Tourette Association of America has a great opportunity to advocate to be potentially included in federal legislation known as, H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. This bill will support systematic epidemiological research, data collection and analysis of neurological diseases at the CDC.
What The Bill Does:
This bill would enhance and expand infrastructure and activities to track the epidemiology of neurological diseases including the incidence, prevalence, and other information and incorporate this into a National Neurological Diseases Surveillance System. In addition it would facilitate further research on neurological diseases at the Department of Health and Human Services (HHS).
Why This Is Important for Tourette:
Prevalence data on Tourette Syndrome in children is inconclusive and contains conflicting results. In addition, there is little to no information on the impact of the disorder in adults. This bill could establish the prevalence of Tourette and help close the gap between identified and undetected cases, especially among ethnic and racial minority populations in the U.S. The bill could also provide for surveillance of Tourette in the U.S. that could provide insights into the long-suspected environment role in the development of the disorder.
TAKE ACTION NOW:
On September 16, 2015 the Tourette Association of America and a Coalition of 11 Non-Profit Neurological Disease Associations will be holding a Briefing for Senators and their staff on H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. The briefing is sponsored by the Tourette Association in collaboration with the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, and United Spinal.
Most recently, the bill passed out of the House of Representatives as part of the 21st Century Cures Act. In order to make this bill a top priority in the Senate we are asking that you, your family and friends to email your Members of Congress to ask for both support of Tourette Syndrome and the Advancing Research for Neurological Diseases Act; while inviting staff members to attend the Congressional Briefing on September 16th.
Write your Members of Congress and urge them to support this initiative by personalizing our form letter. Email Elridge@Tourette.org to let us know you took action. Thank you in advance!
And the second announcement:
Dear Members, Family, and Friends,
Since 2006, Members of the Tourette Association have witnessed the powerful role policy has in supporting students with disabilities when Tourette Syndrome was included within the Individual with Disabilities Education Act (IDEA). As Congress discusses ways in which to improve the education system, hold students and teachers accountable we invite you to voice your concern and relay 3 specific recommendations on how to meet the needs of students with Tourette and Tic Disorders.
Why This is Important!
According to the US Center for Disease Control and Prevention (CDC) 80% of children with Tourette have additional health conditions; 50%-70% have co-occurring Attention Deficit-Hyperactivity Disorder (ADHD) and 30-50% have Obsessive-Compulsive Disorder (OCD). Individuals with Tourette routinely have higher rates of anxiety, depression as well as learning disabilities. These conditions can have a negative impact on a person’s education, career and social life; decreasing their quality of life. Please advocate for Tourette and Education Services.