TouretteConnect – September

The month of September is National Suicide Prevention Awareness Month. I am grateful for the continued public awareness and open discussions about this very serious topic. In a recent Impact Survey led by the TAA, an alarming 51% of adults and 32% of parents of children with TS reported to have considered suicide or participated in self-harming behaviors. In light of this, there are a number of helpful organizations (AFSP, NIMH, NAMI) and resources to support you and your loved ones, including Chapters and Support Groups across the country. Please know that if you need help, there is always someone to call. A Support Group Leader from the TAA Florida Chapter shared a personal story about how suicidal thoughts impacted her family that really hit home for me.

“Of all the words in the English language, none come close to describing the feeling that took root in my heart the day I heard words about suicide fall from my child’s lips. Here he was, only 7-years-old and already exhausted by his existence, overwhelmed by a body beyond his control and destroyed by the certainty that he was less than. Bad. Stupid. Here was my son telling me in the clearest words possible that he felt he had no value, that having Tourette Syndrome meant his future would never be equal to his peers. He was giving up.

It was with the support from the Tourette Association of America and the amazing web of volunteers who helped us survive from one day to the next. My son was one of the fortunate ones— eventually he was able to find his way from despair to joy. The young man he has become is full of strength and resiliency; an incredible self-advocate, a successful student and a very happy (almost) adult.” – Tanya

The beginning of the school year can be very stressful for parents, children, and young adults back at college. The TAA is proud to offer resources to help during this time, as we know change can present challenges for many.

This time of year always brings a rise in communications from the TAA, so I want to outline what you can expect within the coming weeks and months ahead.

• Summer Newsletter
• Research Update: The Importance of Funding Research
• Ballot – Vote on the TAA Board of Directors and attend the Annual Meeting
• Gala Invitation and Communications
• National Conference Information
• #GivingTuesday

As always, thank you for your dedication to the TAA and the Tourette Syndrome community. We can’t accomplish our mission without the help of our constituents and we rely on the generosity of people like you to continue the mission. I invite you to become a donor by making a gift today, getting involved locally, or taking the Tourette Pledge to help further Tourette Syndrome awareness and understanding.

Gratefully,

NYC Marathon with Team Tourette

[Awareness]

Do you have what it takes? Each year, competitors and advocates from all over the nation walk, run, and break down barriers to increase understanding and awareness for Tourette Syndrome. Of the thousands who apply, only a select few are brave enough and tough enough to complete the New York City Marathon. A spot with Team Tourette on November 3, 2019 has become available and we don’t want you to miss out on the chance to make a difference with every mile. 26.2 to be exact.

2020 Young Investigator Awards

[Research]

At the Tourette Association of America we understand and recognize the long lasting impact in supporting early career researchers. To this end, we have launched the Young Investigator Award which aims to encourage these early career researchers to invest their efforts and expertise in increasing the biological understanding of Tourette Syndrome, pursuing clinical research aimed at improving patient care, and developing and testing new therapies. We encourage all to learn more and share this opportunity, as this is the future of TS treatment and care. Pre-Proposals are now being accepted through December 5.

The Power of Education

[Support]

After an intense and unfortunate bullying situation occurred, Albuquerque’s Public Schools sought out an educational opportunity to enlighten students and administrators. Representatives from the TAA traveled to New Mexico on September 10 and 11 to deliver a powerful message about Tourette Syndrome and Tic Disorders to nearly 1,000 people. It was an impactful few days and emotions ran high when Elias, sixth grader at John Adams Middle School, met and connected with another individual living with TS for the first time.

What are the Public Policy Priorities?

[Public Policy]

The Tourette Association of America (TAA) advocates for public policies that support the Tourette Syndrome and Tic Disorder community. We represent the interests of thousands of people across the nation who struggle with TS, Tic Disorders, and co-occurring conditions. We maintain a constant presence in Washington, D.C. where we lobby members of Congress, the White House, and numerous federal agencies who have the power to provide financial, political, and social support.

While the TAA Public Policy Office monitors, endorses and advocates for numerous pieces of federal legislation and regulation, by necessity we must focus our efforts on certain legislative priorities, such as continued government funding for Tourette Syndrome.

What’s Happening

[News & Events]

• 10/6/19 – 10/7/19: Free Webinar: OCD in Tourette Syndrome – A Primer for Parents and Families
• 10/6/19 – 10/7/19: CBIT Training – Glen Oaks, New York
• 11/3/19: Team Tourette TCS New York City Marathon – New York, New York
• 11/18/19: Annual Gala 2019 – New York, New York
• 12/5/19: Young Investigator Pre-Proposals Due
• 1/8/20 – 1/12/20: Walt Disney World® Marathon Weekend presented by Cigna! – Lake Buena Vista, Florida
• 5/14/20 – 5/17/20: National Conference 2020 – Minneapolis, Minnesota