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!!

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

Western NY Support Group Announces 2018 Meetings

The Western NY Support Group will be meeting on the 4th Tuesday of each month. Two groups meet simultaneously, one for parents/adults and a supervised activity group for kids.  Times, dates and location are listed below.

Western NY Support Group Meetings

Kenmore Library

160 Delaware Rd., Kenmore, NY

7:00 – 8:30 PM

The first three meetings have been scheduled for

Tuesday, January 23

Tuesday, February 27

Tuesday, March 27

We will be listing the meeting dates for our other support groups across the state in the near future.

We are also planning a bowling party in the Western NY area for later this month.  We will be confirming the date, time and location in the next couple of days and will email everyone on our membership list a flyer with all the details.

We hope to see many of you at all of our upcoming events.

AUGUST 21st – Annual Fantasy Island Picnic and Awareness Walk

PLEASE HELP US TO RAISE AWARENESS ABOUT TOURETTE SYNDROME AND RAISE MONEY FOR ALL OF OUR CHAPER ACTIVITIES.
[gview file=”http://tsa-gnys.org/wp-content/uploads/2015/06/Family-Picnic-and-Awareness-Walk-.doc”]
 The picnic is $13.00 per person and the walk is $15.00 per person for registration.  If they register for both, it’s $25.00.

You can now donate to our chapter through Justgive.org. Click the link below to go directly to our donation page.



Join Us For A WNY Sky Zone Party

 

Join Us For A Sky Zone Party

  • When: Wednesday, February 25, 2015
  • Time: 4:30 pm- 6:30 pm
  • Where: Sky Zone Indoor Trampoline Park
  • 425 Cayuga Road, Cheektowaga, NY

 

  • 1 hour of jumping followed by pizza and pop $14.00
  • Pizza and pop only (parents) $5.00

You must register in advance by no later than February 23rd. Two ways to register:

1) Send form below and check made payable to TSA of GNYS to address indicated

2) Send form by email to: Michelle Phillips (mphillips3591@gmail.com) and pay on our website (tsa-gnys.org) by Paypal

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Name ____________________ Phone Number _____________________

Paid by Check (enclosed) ___ Paid by check in the mail ___ Paid by Paypal ___

# of adults attending ______ # of children (under 18) attending _______

# of people jumping and eating ______ # of people eating only ________

If mailing send to: Michelle Phillips

128 Knowlton Ave.

Kenmore, NY 14217