Last month seemed to move at lightning speed. I celebrated a few personal milestones this month, turning 40 and completing the NYC Half Marathon. After the race my body was stiff and tired from pounding the NYC pavement, but what I felt doesn’t come close to the aches and pains those with TS endure as a result of their tics. So while I could have spent my Sunday morning in bed, I’m proud I got up early and ran over 13 miles inspired and resolved by the many friends I’ve made in the TS community. I was honored to do it in our signature Team Tourette t-shirt.
On March 3 the Tourette Association of America welcomed and inducted the new class of 2019 Youth Ambassadors. The experience of spending time with these incredible children and their parents is a defining mission moment for me, solidifying the WHY in all that we do. After the training, 150 Youth Ambassadors and their parents, TAA staff and Chapter and Support Group leaders from across the country traveled to the nation’s capital to raise awareness for the most pressing public policy issues facing the Tourette Syndrome community. These priorities include continued government funding, telehealth, appropriations and more. I urge you to learn more about how to get involved and how to join our advocacy efforts, as this is an opportunity to make your voice heard.
To end the month strong, we attended the Wisconsin Chapter’s Tourette Connections Conference led by Ellie Jarvie. Hundreds of community members came out to support the event. I was moved by the large attendance, presentations, and personal stories shared. A particular highlight was learning that Marleen Sundgaard, NASA Engineer and TS advocate, was featured in a recent Rolling Stones article Mission to Mars!
Along with singing, dancing, and future plans to study biology, Andie Hardin, TAA Youth Ambassador has a mission to spread Tourette Awareness. “I’m using my experience to help others and clearing up misconceptions…I’m not confident all the time. I just want people to know they’re not alone. It’s not shameful.”
The Tourette Association of America (TAA) conducted a web-based survey to assess the impact of Tourette Syndrome and Tic Disorders on individuals and families. The survey found an alarming rate of both children and adults who have considered suicide or participated in self-harming behaviors and highlighted the impact that co-occurring conditions have on those with Tourette. Results also imply that the time to diagnosis may be decreasing, as 71% of children were diagnosed within 2 years of symptoms, while most adults were diagnosed after 10+ years. This impact survey results will help direct programming to meet the needs of our community.
Raymour & Flanigan Easter Egg Hunt
Join an Easter Egg Hunt at select Raymour & Flanigan stores on Saturday, April 6 from 1pm – 3pm. You can expect an afternoon of fun, treats and awareness. Any purchase made that day will receive a 10% discount. Raymour & Flanigan believes in giving back to the community and we are thankful to them for hosting these fun and creative events to benefit the Tourette Association of America.
Store locations include: Jamaica Avenue, Queens, Metropolitan Avenue, Queens, and Fulton Street, Brooklyn.
The Impact of Advocacy Day
On March 5, approximately 150 TAA Youth Ambassadors, parent/guardians, state Chapter leaders and Advocacy Day attendees went to Capitol Hill to advocate for Tourette Syndrome. Attendees went to more than 120 meetings with Representatives and Senators from 24 states. Thank you to all the attendees of Advocacy Day for making this event a success.
[News & Events]
- News: Mass General Press Release: Major Genetic Study Confirms that Many Genes Contribute to Risk for Tourette Syndrome – Jeremiah Scharf
- 4/6/19: Raymour & Flanigan Easter Egg Hunts
- 5/3/19 – 5/4/19: Behavior Therapy Institute/CBIT Training, Birmingham, Alabama
- 5/7/19: Driving and Tourette Syndrome: What Should We Know?
- 5/19/19: National 5K Run/Walk, Flushing, New York
- 6/15/19: Bridging the Healthcare Disparities in Tourette, New York City, New York
- 6/14/19 – 6/15/19: Behavior Therapy Institute/CBIT Training, Orlando, Florida
- 6/24/19: Golf Classic & Dinner and Ladies’ Game Day, Lincolnwood, Illinois
- 11/3/19: Team Tourette TCS New York City Marathon, New York City
- 11/18/19: Annual Gala 2019, New York City, New York
- Save the Date: National Conference 2020, Minneapolis, Minnesota