Turn Niagara Falls Teal for Tourette Awareness A HUGE SUCCESS!

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.

THANK YOU!

Sponsored by:

The Tourette Association of Greater NY State and Tourette Canada

First EVER INTERNATIONAL EVENT

Action Needed

To see the number of signatories and to read some of the comments posted so far, click here.

 

We have an exciting opportunity to influence how children with Tourette are supported in school in the state of New York.  You can help.

This past June, one of our teens in the Greater NY chapter was expelled from a summer music camp due to coprolalia. It was a traumatic experience for him and his family, but the story turned out to have an unexpected silver lining. I’ll let his mother, “Sophie,” explain:

After my son, “Malik”, was expelled from music camp in June because of coprolalia, I realized that it was going to be really important to get Tourette training set up for his next music camp in July. I called the July camp director and explained what had happened in June. I was nervous, because our school district had fought us tooth and nail on our requests for Tourette education.

But to my amazement, I received a surprise email from Joanne LaCrosse, a high-level special education official at NYSED (New York State Education Department), which runs the July camp. Joanne, the head of Special Education Policy and Professional Development, first congratulated my son on his acceptance into their very competitive program. Then she explained that upper level leadership of the State Education Department had asked her to assist in providing training on TS, to ensure that Malik would have a positive experience at the camp.

What a breath of fresh air! The training of both staff and campers took place and was extremely helpful. Joanne actually drove out from Albany in person, twice, once to assist with staff training, and another day to assist with peer training! Malik had a wonderful experience at the program, thanks to her support.

In my thank-you letter, which I sent to the assistant commissioner for special education, Christopher Suriano, I explained how helpful the training had been for Malik’s successful experience at the NYSED camp, and asked him to meet with Sue and me, so we can can describe the difficulties that many families in New York State have experienced, trying to set up Tourette education at school for our children.

To our delight and surprise, the answer came back that YES! The assistant commissioner would meet with us!

We have consulted with, and obtained 100% support, from the four other TAA chapters in NY State, as well as the members of the NYS Medical Centers of Excellence in Tourette Syndrome. Representatives of each chapter, as well as the NYS Centers of Excellence, will be attending the meeting in Albany along with Sophie, her son, and me.

But we need you!

We have developed a petition to send in advance of this meeting. Please click the link at the bottom of the email to view and sign the online petition. I know for a fact that so many students have dealt with the lack of understanding of school personnel and I know how devastating this has been for anyone who has faced it. Kids are teased, bullied and punished for symptoms of a neurodevelopmental disorder that they cannot control. Our goal is to obtain a mandate from NYSED for all schools in NY State who have a student enrolled with TS to provide in-service training on this very complex disorder. We are also requesting peer education, if so desired by the parents, to help kids with TS avoid the teasing and bullying that so many of them experience.

You can view the petition, and add your signature, at the link below. Please feel free to ask other people you know to sign it. Any resident in the state of New York age 13 or over may sign. Don’t hesitate to ask neighbors, family members, medical providers, teachers, etc., to sign too. We will post updates on the TAA of Greater NY State website at tsa-gnys.org.

There’s plenty of space in the online petition form to let NYSED know about your specific experience and point of view around Tourette education. But if you want to write your thoughts in a letter, you can! Just scan and email your letter to us at tourette.gnys@gmail.com, and we will forward all the letters received in a batch to the Assistant Commissioner, along with the petition.

Please do this now to help all kids from across NY State who are afflicted with Tourette Syndrome to be understood and be able to reach their full potential.

Supported by:

Jane Zwilling and Kate Callan, TAA of Long Island
Helene Walisever and Sharon Hammer, TAA of Hudson Valley
Gary Wainwright, TAA of Rochester and the Finger Lakes Region
Lisa Hazen, TAA of NY City

Click here to sign the online petition.

We need to receive all signatures and letters by Saturday, October 21 Sunday, October 29.

Thank you!
Susan Conners, President
TAA of Greater NY State

Chapter Member Presents Forum about Tourette Syndrome at the NY District Kiwanis Club Convention

On Saturday, August 26, 2017, in beautiful Lake Placid, NY, our chapter member Christina McCormick, who happens to be the President of the Amherst Kiwanis Club, presented a half-hour forum on “Children with Tourette Syndrome,” as part of the annual Kiwanis Convention for the New York District.

Chris tells us:

“The New York District Kiwanis Governor Elect’s upcoming Governor’s project will focus on children who have disabilities. One of the spotlights will be on TS and all its associated disorders. There are two main goals for this spotlight:

  1. bring awareness about Tourette Syndrome to the public
  2. have individual Kiwanis Clubs focus on a service project for children with TS

“This is an exciting initiative from our Governor-Elect and it will be her focus in her 2017-2018 Governor’s year. Local Kiwanis clubs around the state can participate, and our goal is to get information out there to raise awareness of TS, and hold events for kids with TS.”

Chris and her husband, Shawn, have been very involved in the Tourette Association of Greater NY State for many years. Shawn currently serves on the chapter board. We are very grateful to Chris for initiating this presentation and the exciting opportunity that the chapter has to spread awareness of TS. We are very proud of Chris for all of her hard work on this. Chris and Shawn have a son with TS.

Congratulations on your presentation, and thank you, Chris!