I hope you had a wonderful holiday celebrating with family and friends. Holidays mean a break from school, which is a special time for me because of added time with my children. However, I am sure all parents can relate to the stress of juggling responsibilities while keeping our children engaged, happy, and safe. Changes in daily routine can be difficult, so please take advantage of the many resources we offer.
The Tourette Association of America hosted its annual Research and Medical Meeting, including members of our Scientific Advisory Board, Medical Advisory Board and Centers of Excellence, on April 9 -10 in New York City. The meeting brought together leading experts in research, clinical care, and treatments for TS, as well as TAA partners and collaborators from the government and pharmaceutical industry. The two-day event featured presentations and updates on TS initiatives from previously funded TAA scientists, international collaborative efforts, treatment and care options, and telehealth for the TS community. We are thankful to the researchers, medical professionals and other thought leaders who are dedicated to working in the TS field.
As we near Tourette Syndrome Awareness Month (May 15 – June 15), I invite you to learn about our many initiatives that will continue to raise awareness and understanding. The goal of this year’s Awareness Month activities focuses on the strengths of the TS community. We have seen careless remarks being made by the media, misrepresenting and perpetuating stigma. We want to remind people that we are mothers, fathers, children, educators, award-winning journalists, Olympic Gold medalists and professional athletes, actors, rising pop musicians, authors and so much more. In the coming weeks, we will be launching a Tourette Syndrome Pledge that I hope you will sign and inspire others to do the same.
There are a number of national initiatives that I hope you find exciting and encourage you to participate in:
- Driving and Tourette Syndrome: FREE webinar on May 7
- Youth Ambassador Training Program: July 12 – 13 ages 12 – 17
- NEW Youth Ambassador Rising Leaders Program: July 12 – 13 ages 18 – 25
- Behavior Therapy Trainings in Birmingham, Alabama: May 3 – 4 and Orlando, Florida: June 14- 15
Join us as we continue our journey of spreading awareness. Please volunteer, get involved in one of our many events across the nation, or make a contribution.
Gratefully,
Everything Happens for a Reason – A Personal Story
[Awareness]
“Encouraged by his acting teachers, Craig began to believe in himself. He made new friends and reinvented himself — not as a victim, but as a strong, perseverant individual. And as he did, his tics became less important. Understanding what it felt like to be “different,” he has also become more sensitive and compassionate than most people his age, not afraid to reach out to others who face their own challenges.” – Linda, Craig’s mother
Annual Research and Medical Meeting
[Research]
Tourette Syndrome is a unique condition that overlaps many different medical and research disciplines. The 2019 annual Research and Medical Meeting was a unique opportunity to bring experts together to exchange ideas, learn from one another, and collaborate to ultimately improve treatment and care for those living with Tourette Syndrome and Tic Disorders.
Free Webinar – Driving and Tourette Syndrome: What Should We Know?
[Support]
Driving and community mobility are important for independence and often considered a rite of passage into adulthood. On May 7, join a free webinar as we will highlight the potential challenges individuals with Tourette Syndrome might experience during drivers’ education and after they are licensed.
A Thank You to Chapter and Support Group Leaders
[Public Policy]
Thank you to TAA Chapter and Support Group leaders for the outreach done in support of the CDC Tourette Syndrome program. As a result of our combined efforts, a record 102 members of Congress have signed the House letter of support and 24 Senators signed the Senate letter of support. Both these numbers are new records for the TAA and are even larger than other patient group support letters, a major accomplishment that shows what hardwork and reaching out can accomplish.
What’s Happening
[News & Events]
- News: Researchers need your help to learn more about Tourette Syndrome and potential treatments. Learn more about clinical trials in your area.
- 4/25/19: Chuck E. Cheese’s Non-profit Fundraising Event – Flushing, New York
- 5/3/19 – 5/4/19: Behavior Therapy Institute/CBIT Training – Birmingham, Alabama
- 5/7/19: Free Webinar – Driving and Tourette Syndrome: What Should We Know?
- 5/15/19: TODAY Show Plaza
- 5/15/19 – 5/17/19: European ESSTS – Hannover, Germany
- 5/18/19: De-stress your Tourette! Workshop – Philadelphia, Pennsylvania
- 5/19/19: National 5K Run/Walk – Flushing, New York
- 5/19/19: Mid-Tennessee Walk for Tourette Syndrome – Nashville, Tennessee
- 6/1/19: UF TS Group Walk – Gainesville, Florida
- 6/2/19: Run For The Roses 5K – Roselle, Illinois
- 6/14/19 – 6/15/19: Behavior Therapy Institute/CBIT Training – Orlando, Florida
- 6/15/19: Bridging the Healthcare Disparities in Tourette – Manhattan, New York
- 6/24/19: Golf Classic & Dinner and Ladies’ Game Day – Lincolnwood, Illinois
- 7/12/19 – 7/13/19: Rising Leaders Program – Orlando, Florida
- 7/12/19 – 7/13/19: Youth Ambassador Program – Orlando, Florida
- 11/3/19: Team Tourette TCS New York City Marathon – New York
- 11/18/19: Annual Gala 2019 – Manhattan, New York
- 1/8/20 – 1/12/20 Walt Disney World® Marathon Weekend presented by Cigna! – Lake Buena Vista, Florida
- Save the Date: National Conference 2020 – Minneapolis, Minnesota
