At 7:30 on June 15, 147 members of our Tourette family gathered together in a Niagara Falls NY State Park to celebrate and culminate Tourette Syndrome Awareness Month. Families came from all parts of NY State including Western NY, Syracuse, Albany, Westchester County and as far away as Wisconsin to enjoy a wonderful picnic, a raffle and games, all finishing at the brink of the Horseshoe Falls to witness an awe-inspiring event: turning Niagara Falls teal, to make the world aware of a disorder called Tourette Syndrome. Right across the Falls was a group of families from the Hamilton-Halton, Ontario, Chapter of the Tourette Foundation of Canada waving back at us from across the river. The teal lights were kept on for 15 minutes, accompanied by a round of fireworks and cheers and shouts from all of us in attendance.
I have headed the Greater NY State Chapter for its 34-year existence, and this is without a doubt the biggest thrill I have experienced. We had live media coverage from two major TV stations and an interview with myself and a mother and daughter with TS, all of which aired June 15 and again June 16.
I had experienced two very difficult IEP meetings Wednesday and Friday of that week, one that involved a 10-day suspension of a 7-year old for symptoms of his neurological disorder. To see these kids come together in this small part of their world where they can be accepted and understood and spend time with kids like themselves, was overwhelming. Over and over again I heard how great it was for them to be with their “Tourette Family” and to be a part of bringing attention to this disorder internationally. Due to an auto-immune disorder, I use a mobility scooter, and at least 15 of these kids came to me to offer to help me get my scooter down the hill to the bottom of the Falls for a better view and better pictures. These are the kind hearts of kids, many of whom are teased, bullied and punished on a daily basis because of their symptoms. They show us the best of humanity.
A heartfelt thank-you goes out to so many people for helping make this such an amazing evening:
- Our food donators – Zweigels of Rochester and JMills Distributors of Buffalo
- Our sign makers: Christine McCormick and her son, Connor
- Gary Wainwright, Chair of the Greater Rochester Chapter who attended the event and rallied his troops who made the drive in large numbers
- Board Members: Lisa and Michelle Phillips for making several runs for food items in advance of the picnic and set up the food tables
- Our set-up committee: Michelle Phillips, Lisa Phillips, Olivia Sambuchi and Ben, Kaitlyn and Joey Miteff, Jessamine Daley-Griffen and her whole family, Chris and Connor McCormick, Rose Snelson and Colin Davis
- Our hot dog grillers: Peter Wegman, Jeremy Daley-Griffen, Chris McCormick. Peter also was able to get all of the hotdogs for the picnic donated.
- National Board Member, Fred Cook, who attended the event representing TAA of America. Fred is a long time Buffalo resident and member of TAA of Greater NY State
- Our great friends from the Hamilton-Halton Chapter of Ontario for convincing the Niagara Falls Illuminations Board (located in Ontario) to turn the Falls teal and waving to us across the border.
- To all of our wonderful families who attended, supported us and most importantly gave me hundreds of hugs, put a huge smile on my face and made me realize how lucky I am for my whole “TS Family”. You enrich my life more than you will ever know. We hope to make this an annual event, which will grow in size each year until the world knows and understands what Tourette Syndrome is.