‘How many of you have had a night out planned, or arranged coffee with friends and suddenly the 4 walls you inhabit seem the only safe haven because it’s the only place you don’t have to pretend you are ok, so you cancel.
Or when you are invited out you tell them how terribly sorry you are but you’re already booked up that weekend, when you are actually just really busy holding it together in your safe box.
And so the first problem starts, all by itself. People stop asking you and the isolation that at first wasn’t true becomes your only truth.
Please don’t give up on your friends. Ring them, go round, even when they don’t want you to. Because they really do, they just don’t know how to say it.’
This was a recent thread circulating on social media. I shared this statement on my Facebook page to support Mental Health Awareness Month. It is a sentiment that resonates deeply with me. It may look slightly different, but I think there is truth in this statement for many of us in the Tourette community. October is Mental Health Awareness Month, but it is also a month dedicated to raising awareness for anti-bullying, OCD and ADHD. These topics are real and relevant, woven throughout our lives. The reason I share this is to say, if you are experiencing any of these, you are not alone and we, the Tourette Association of America, are here for you.
We are continually working and improving upon programming for all ages and various awareness efforts. My hope is that our impactful work will result in a day when we no longer have to dedicate a special month to make our voice heard and combat stigma. But we can’t do it without you. We rely on you to tell us how can we better serve our children, parents, caregivers, adults, teachers, doctors… the list goes on. If you have an idea, we welcome it.
Thank you for all that you do to make life better for all people affected by not only Tourette Syndrome and Tic Disorders, but mental health issues and co-occurring conditions.
Our Future Leaders
Applications for the 2019 Youth Ambassador Training are being accepted through November 16. This program trains and supports teens to advocate for and talk about Tourette and Tic Disorders in their community, with their elected officials and before their peers. Youth Ambassadors also have the opportunity to discuss Tourette and Tic Disorders in Congress during their “Trip to the Hill.”
A Focus on Tourette Syndrome
This year’s Neurobiology of Disease in Children Symposium, as part of the larger Child Neurology Society Conference, focused on Tourette Syndrome for the first time in approximately 10 years. The Tourette Association of America supported and presented at this all-day meeting in Chicago, which included a number of Young Investigators who are working on TS or interested in learning more about TS.
“This meeting was an exceptional opportunity to engage and educate child neurologists on issues relevant to patients with Tourette Syndrome” said Jonathan Mink, Co-Chair of the Symposium, President of the Child Neurology Society and Director of TAA’s NY Consortium Center of Excellence in Rochester, NY.
Practical Solutions for Better Days
Have you ever felt overwhelmed? Felt that there is just too much to do to ensure your loved one’s success?
Join us for a FREE webinar on Thursday, November 1 in which Dr. Kenneth Phelps and Dr. Heather Simpson will discuss the idea of a “Tic Management Lifestyle” with simple and practical solutions that can have a large impact for better days.
Take Action Today
Thank your Senator and Congressman to help continue our funding. The President recently signed into law the Defense, Labor-HHS-Education Appropriations for Fiscal Year (FY) 2019 which included the continued funding of $2 million for the Centers for Disease Control and Prevention (CDC) Tourette Syndrome Public Health Education and Research Program. This program is critical for the Tourette Syndrome (TS) and Tic Disorder community.
[News & Events]
- Participants needed: Tourette and Tic Disorder Study
- 11/1: Young Investigator Award Deadline
- 11/1: Tic Management Lifestyle Webinar
- 11/4: NYC Marathon
- 11/10: Panel Discussion with Expert Clinicians
- 11/15: Gala Honoring Domenick A. Cama
- 11/16: Youth Ambassador Deadline
- 1/9/19 – 1/13/19: Walt Disney World® Marathon Weekend Presented by Cigna®