Youth Ambassador Summer 2018

Congratulations to Ezra Daly-Griffen !!

This year the Tourette Association of America is hosting a second Youth Ambassador Training. TAA of Greater NY State is very proud to announce that one of our youth members has been selected to attend this training. Congratulations to Ezra Daly-Griffen of South Dayton, NY. Ezra is a student at Pine Valley Central Schools.   For those of you who have attended Camp Ticapalooza, you will surely remember Ezra, our fabulous drummer. Ezra has been very involved in our chapter for several years, coming to many of our chapter events, sitting on a youth panel at a conference for educational personnel, and attending our camp annually. He is always willing to volunteer and lend a helping hand with whatever needs to be done. This training will be held July 13-14, 2018 in San Antonio, Texas. Ezra will be traveling to San Antonio with his mom, Jessamine, one of our long-time and fabulous camp counselors. Ezra’s older sister, Willow, was selected as the chapter Youth Ambassador in 2016 and attended the training in Washington, DC.

We wish Ezra and his mom safe travels to San Antonio and our congratulations on being selected to represent our chapter.

We are so very proud of you, Ezra!!

Gute Reise, Trevor Scott!

TAA of Greater NY State would like to congratulate one of our graduating seniors for some outstanding accomplishments and exciting new adventures. Trevor Scott will graduate next weekend from Onondaga High School near Syracuse.   Trevor’s path has never been easy.   Due to his severe TS symptoms, including coprolalia, he has experienced bullying, teasing and discrimination since I first met him when he was 8 years old. I cried many times after leaving whatever school he was in. I have often wondered where the strength came from, to carry him through these extremely difficult years. Despite all of this adversity, he is graduating high school with honors.  He has been selected as one of our chapter Youth Ambassadors, has sat on panels to educate other people about TS, has attended our annual Camp Ticapalooza for many years, and will be back next year as a junior counselor.  Last year he joined me and two other young adults with TS to speak to the law students at Syracuse University about living with TS.

Trevor’s one dream in life was to travel to Germany on an exchange program. He has been studying German throughout middle and high school and it’s been one of his favorite classes. He applied for the exchange program last year and was told that he could not go because of his severe tics. He was not willing to give up that dream and decided to apply again this year, even though he would have already graduated by the time the trip would take place. His new German teacher not only accepted him but also contacted me to learn everything he could about TS so that Trevor’s trip would be successful and without incident.

In July, Trevor will embark on a month long exchange trip hosted by his school where he will be spending two days in Reykjavik, Iceland, a week in Berlin, and two weekends in Uelzen, in northern German, with a host family. Not surprisingly, he has arranged in advance to do a presentation on TS for the German students at their partner school, Lessing Gymnasium. Trevor will be the only senior on the trip.   He will be attending college in the Syracuse area next year. Pictured here is Trevor and his mother, Shannon, near the Capitol Building in Washington, DC, during his Youth Ambassador training. Please join me in wishing Trevor “Gute Reise” as he heads off to Germany. To all of you dealing with TS on a daily basis, “Don’t ever give up on your dreams.” And to Trevor, you are my hero! Have the time of your life.

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

Happy Birthday Aiden!

Let me introduce you to Aiden Pernick from Orchard Park, NY.

Today’s is Aiden’s 10th birthday. Instead of birthday presents, Aiden asked his friends and relatives to make a donation to The Tourette Association of Greater NY State. He collected $100.

We could not be prouder of this remarkable young man.

I met with Aiden and his Dad this morning and he presented me with the checks he had collected. I have known Aiden and his family for a few years and am overwhelmed by his kind and caring heart.

THANK YOU, AIDEN, from all of the members of the Tourette Association of Greater NY State. I wish you the best birthday ever. You certainly deserve it.

Sue Conners