A few times each year the Tourette Association of America, in collaboration with the Congressional Tourette Syndrome Caucus, hosts Tourette Syndrome and Tic Disorder briefings on Capitol Hill. The importance of these assemblies have proven to be tremendous in showcasing the continued need for funding and support from the government. The most recent briefing was Shining Light on Tourette Syndrome: Medical and Scientific Advances in Tourette Syndrome on October 16. TS Caucus Co-Chair Rep. Steve Cohen joined us alongside policy makers and staff to learn about medical advances in Tourette Syndrome and Tic Disorder research and treatment. Joining me from the TAA was Randi Zemsky, Chairman of the Board of Directors, Diana Shineman, Vice President of Research and Medical, and Diana Felner, Vice President of Public Policy. Leading the discussions were prestigious medical professionals from the community including Joohi Jimenez-Shahed, MD, Matthew Capriotti, PhD, and Nicole Calakos, MD, PhD.
It’s October, and while many of us are making plans to celebrate Halloween we cannot ignore some important causes the month sheds light upon. October is National Bullying Prevention Month, ADHD Awareness Month and OCD Awareness Week. Tourette Syndrome is a layered disorder that remains misunderstood among the general public. There is no one-size-fits-all approach, and because of this, the TAA partners with like-minded organizations that support our efforts.
The TAA Teal & White Gala is only a few, short weeks away! On November 18 we will honor David Begnaud, CBS News Correspondent, for his commitment to Tourette Syndrome awareness. The evening’s keynote will be Jumanne Williams, NYC Public Advocate, and a special musical performance by Michael Wolff, former TAA Board Chair, and his trio at our biggest fundraising event of the year. For tickets and sponsorships click here.
In closing, I sincerely hope that you will take advantage of the many resources, events or support networks we have available across the nation. You are not alone on this journey. We are in it together.
Become a Youth Ambassador
[Awareness]
The next Youth Ambassador training, for teens aged 12-17, is being held on March 2 – March 4 in Arlington, Virginia. This three day event serves at the heart of our mission and offers new and engaging ways for teens and their adult team member to learn about advocating in your local community. It is an excellent opportunity to connect with other teens impacted by Tourette Syndrome and to participate in National Advocacy Day. The application deadline is November 15.
Supporting Research Changes Lives
[Research]
When you invest in research, there is a clear and direct impact on the lives of individuals with TS. We have identified four state-of-the-art research projects this year that will lead the way in scientific discovery to better understand TS, however, we need your help. This year we need to raise over $500,000 to fund research that will propel advancements and pave the way for a better quality of life. Please consider making a gift today that will bring hope, help, and acceptance to the hundreds of thousands of individuals who live with Tourette Syndrome and Tic Disorders across the nation.
Online Support for the Community
[Support]
The Tourette Association of America is pleased to offer a series of online support groups for parents and young adults. These support groups are available for, but not limited to, people who may be located in underserved areas with limited access to resources and support. Each support group will meet once a month from November 2019 to August 2020 for approximately 90 minutes. Space is limited and registration is on a first come, first served basis.
National Day of Advocacy
[Public Policy]
On March 4, Youth Ambassadors and their team members, TAA staff and volunteers, as well as members of the community head to our nation’s capitol to #Rally4Tourette. This day of advocacy is what garners awareness for the most pressing issues facing the TS and Tic Disorder community and showcases the need for continued funding. If you can’t attend in Washington, D.C. you can still support this effort by setting up appointments with your local representatives in your home town. Please contact [email protected] to learn about setting up a meeting.
What’s Happening
[News & Events]
- 11/3/19: Team Tourette TCS New York City Marathon – New York, New York
- 11/12/19: Adult Webinar Series: Managing Stress
- 11/17/19: End the Stigma: A Walk for TS Awareness – San Diego, California
- 11/18/19: Annual Gala 2019 – New York, New York
- 12/5/19: Young Investigator Pre-Proposals Due
- 12/5/19: FREE webinar: Sleep Difficulties and Tourette Syndrome
- 1/7/20: FREE webinar: ADHD and Tourette Syndrome
- 1/8/20 – 1/12/20: Walt Disney World® Marathon Weekend presented by Cigna! – Lake Buena Vista, Florida
- 1/16/20: Adult Webinar Series: Transitioning Care to Adulthood
- 1/18/20 – 1/19/20: Behavior Therapy Institute/CBIT Training (TS-BTI) in San Antonio, TX
- 2/8/20 – 2/9/20: Behavior Therapy Institute/CBIT Training (TS-BTI) in Miami, FL
- 5/14/20 – 5/17/20: National Conference 2020 – Minneapolis, Minnesota
