TouretteConnect – December

From all of us at the Tourette Association of America, we wish you a joyous holiday season and a prosperous new year. 2019 was an impactful year, engaging the community with more training, education, events, and other awareness opportunities around the country. We hope to continue to shift public perception and inspire greater acceptance and inclusion for the TS community. This work is only made possible through your support. Make a gift before December 31 and it will be doubled – up to $100,000 – thanks to The Ochsman Foundation.

Sadly, earlier this month we learned about the passing of Peter Frates, ALS advocate. He was a true inspiration, and an icon for deploying one of the most successful awareness campaigns to date – the Ice Bucket Challenge. May we commend his efforts, draw from his creativity, and be inspired to elevate awareness and education about Tourette Syndrome and Tic Disorders. What made this challenge so successful was the sheer volume of those who took part, but it started with Peter. All it takes is just one person for monumental change.

It also takes just one person to make a rude, or flippant comment about TS which has a negative impact on the progress made. That’s why, when Nick Cannon recently used TS in an uninformed way, we called him out on it with an offer to provide the facts. The outpouring of messages, tweets, and shares remind me that we are not alone on this journey – and it is our job to remind others that they are not alone too. Not alone in waiting to receive a diagnosis or an effective treatment. Not alone in their effort to explain to their teacher or boss why they “just can’t stop doing that.” Not alone in thinking that, once again, a trip to the allergist or ENT isn’t going to stop the throat clearing. Not alone in being completely visible, when all you want is to be invisible. Not alone in sometimes feeling very much alone.

Thousands of individuals and families reach out to the TAA seeking kindness, guidance and invaluable support. This work cannot be done alone. We remain invested in providing new and improved tools, but in order to do so, we need your unwavering support. While holiday shopping is on all of our to-do lists, sometimes the best gift is the one that’s most meaningful and changes a life. Make a gift before 12/31 and feel good knowing that you made a difference.

The evolution in TS understanding and social acceptance continues to change, but you remain an integral piece. Thank you for your commitment to making life better for all people impacted by TS or a Tic Disorder.

Gratefully,

Run Disney with Team Tourette

[Awareness]

The deadline to register is Friday, December 20. Join Team Tourette in Walt Disney World, January 9-12, to race through the theme parks and raise awareness. Some of the most adored characters will cheer you on from the sidelines and enchanting entertainment will be along the routes.

Click to Register

Treating Tourette Together – Make your Voice Heard

[Research]

As you may recall, this past August was the Treating Tourette Together summit. Doctors, researchers, individuals with TS, TS family members, and care providers assembled to discuss the future of behavior therapy for Tourette Syndrome. The next phase is hearing from each of you! Read a summary from the summit and participate in a brief online activity to make your voice heard!

Click to Read More

Spanish-Speaking Online Support Group

[Support]

The TAA is excited to offer an online support group for Spanish-speaking parents of children with Tourette Syndrome or Tic Disorders. The support group is available for people who may be located in underserved areas with limited access to resources and support. Each support group will meet once a month from January to August 2020 for approximately 90 minutes. Space is limited and registration is on a first come, first served basis.

Click to Register

Telehealth Medicare Coverage Expansion

[Public Policy]

The need for telehealth services have been on the rise due to its ability to increase access to healthcare. In light of this, the TAA has endorsed the Connect for Health Act in an effort to improve access and coverage for Medicare recipients. This bill removes barriers and expands telehealth coverage for Medicare through the Social Security Act.

On March 4, in Washington, D.C., we will advocate for the most pressing issues facing the TS community on National Advocacy Day. Youth Ambassadors and their team members, TAA staff and volunteers, as well community members, will head to our nation’s capital to #Rally4Tourette.

Click to Read More