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’ve spent a fair amount of time thinking about what I’d like to say to you all this holiday season. To be honest, I’ve struggled to steer clear of being too cliché, too negative, too positive, or too predictable. I’ve struggled with these thoughts because it’s been such an unpredictable time in an uncertain year. When we gathered together in January to plan the year ahead, the TAA team and I could not have imagined a year like 2020. Above anything else, this was a year where our need for one another was highlighted, bold-faced, ENLARGED. We needed to acclimate, pivot, and turn on a dime — that’s something the TAA has done particularly well in the face of COVID-19.
“Words matter.” It’s a phrase we hear and use frequently. It’s also something that can be a particularly tricky mine field for those living with Tourette Syndrome (TS) and, more specifically, coprolalia. In October, we shared with you a story out of Indiana where a young man living with TS was asked to leave his college campus as a result of offensive and unnerving phrases he involuntarily uttered. Unfortunately, this isn’t the only incident that has come across my desk in the last few weeks.
At age five and half I was diagnosed with Tourette Syndrome, and until I was nineteen, I struggled horribly. I had episodes where I would tic hundreds of times in an afternoon, sometimes over a thousand times in a day. I had ‘coprolalia’, ‘copropraxia’, but my ability to be a mimic, spurred on by my ‘echolalia’, I have found to be of great benefit today. I was bullied a great deal, even beaten up on occasion, and though it was sport for my peers to ostracize me, despite this I had a good attitude, and amazing parents, who allowed me to be creative, explore, and try new things. After a twelve year struggle, my Mother, who never gave up hope for a cure, and never allowed me to give up hope either, discovered a unique balance of homeopathy, exercise, and spirituality that proved just the right thing to help me tip the scales from an unmanageable case of Tourette to a more manageable one.
2020 has certainly proven to be one of the most unpredictable and challenging years for everyone. While the uncertainty of the pandemic may have made us rethink how we support the community, it did not derail us. In fact, by the close of this year the Tourette Association of America will have tripled our virtual offerings, with almost 100 virtual support initiatives – from a free Virtual Conference, weekly webinars, a Virtual Gala and virtual walks around the country. To continue at this pace, we need your financial support.
We have been hard at work preparing for our Virtual Gala coming up on October 29. I am excited to share that ticket sales are now available and are affordable for the whole community. In addition, our online auction has gone live with a plethora of amazing items – from an autographed Billie Eilish photo, to an exclusive trip to Greece, autographed sports memorabilia and so much more. Join us, spread the word and peruse a number of amazing items, that fit all budgets, just in time for the holiday season. There is a phenomenal lineup of speakers planned for the Virtual Gala that I can confidently say, without giving anything away, you won’t want to miss. The conversations we’ve had gearing up for the event have spanned the gamut from ear-to-ear smiling to tears – in the most touching of ways. The evening will showcase the resiliency, tenacity, and compassion of our community that is breaking down barriers for all to live their most authentic life.
On March 4, in Washington, D.C., the Tourette Association of America will advocate for the most pressing issues facing the TS community on National Advocacy Day. Youth Ambassadors, TAA staff, volunteers, and community members will head to Capitol Hill to speak with elected officials on policy affecting the community. Youth Ambassadors and a Support Group Leader share their experiences from past Advocacy Day events and what it was like to #Rally4Tourette.
Dear Friend, I am excited to share updates on progress being made on behalf of our resilient community. We’ve launched a new donor exclusive series that delves deeper into advancements made as a direct result of your contributions. There has always been a heightened need for access to TS programs and offerings that support underserved areas across the US. In our current state, we have tripled offerings to ensure everyone – underserved or locally supported by a TAA Chapter or Support Group – can have the access that is so desperately needed.