Mission moments fuel me. It’s what drives me to do better and be better on your behalf. I recently traveled to Atlanta, Georgia for a Tourette Syndrome Symposium hosted by the South East Consortium Centers of Excellence. This event was designed to educate medical professionals, educators and families in the local areas affected by Tourette Syndrome. Our phenomenal doctors and practitioners continue to amaze me with the breadth of their knowledge and deep commitment to the TS community. I always learn something new from them. Personal stories from families move me most. I am often so touched by their stories I have to choke back emotions when delivering public remarks to a TS audience, as was the case this time around! Nevertheless, I got up and reminded the audience they are not alone. There is a whole cadre of people working to make life better, easier and less lonely. As I reflect on this experience, I am humbled to be leading this organization, working hard to make a difference.
Recently in the media, there has been a few big wins for the Tourette community. I know I am not the only one cheering for Samuel Comroe on America’s Got Talent – he is hilarious and elevating awareness for TS. He will perform live next week to continue his journey on AGT, be sure to tune-in and vote for Samuel! Additionally, we are excited to welcome him at our annual Gala on November 15, where he will perform and talk about his life growing up with Tourette Syndrome. In addition, the Tourette Association of America has teamed up with A&E to offer a docuseries called Raising Tourette’s. The first episode aired on Wednesday, August 15 – watch the latest episode and let us know what you think!
There are a number of engagement opportunities and events taking place throughout the country. It is an exciting time to be a part of the TAA and I would like to personally invite you to get involved and learn more about becoming a member, volunteering and so much more.
Talk Saves Lives: An Introduction to Suicide Prevention
Join this free webinar on August 29 from 6pm – 7pm, hosted in partnership with the American Foundation for Suicide Prevention. Dr. Harkavy-Friedman will discuss information about suicide, risk factors, warning signs and how to have a caring conversation if you’re concerned about a loved one. The goal is to gain an understanding of suicide and how we can all play a role in suicide prevention.
TAA Young Investigator Award
The Tourette Association of America aims to encourage 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. To this end, the TAA is offering Young Investigator Awards in hopes of fulfilling this goal.
Back to School Resources
Returning to school after summer break can be difficult for not only students living with Tourette Syndrome, but parents and teachers as well. To make this transition easier, we have compiled resources for children, teens, parents, and educators to ensure a smooth start to a new school year. These tools include resources for co-occurring conditions, educating peers, bullying, getting into college, advocating for your child, education plans and so much more.
Ensuring Access to Treatment – Drug Pricing
You likely have heard about the President’s Blueprint to Lower Drug Prices and Reduce Out of Pocket Costs in the news. TAA submitted comments to the Administration, and will continue to work with the National Health Council and other like-minded patient groups to ensure our voices are heard as the process moves forward.
[News & Events]
- 8/24: Greater New York State Chapter Family Picnic
- 8/25: Ohio Awareness Walk
- 8/29: Talk Saves Lives: An Introduction to Suicide Prevention
- 10/5 – 10/7: jetBlue Long Beach Marathon & Half Marathon Weekend
- 10/20: TS Across a Lifespan: What You Need to Know
- 11/15: Gala Honoring Domenick A. Cama
- 1/9/19 – 1/13/19: Walt Disney World® Marathon Weekend Presented by Cigna®