Message From Ramona Jennex - President of the Board of Directors We know that raising awareness about Tourette Syndrome helps the lives of people who have Tourette and their families. Awareness about Tourette has been gaining momentum over the last year and social media has proven to be an incredible tool of communication.

Melissa C. Water, Tourette Canada’s Virtual Support Coordinator, creates a blog and videos answering questions about TS and deconstructing the many myths and stereotypes. Thanks to social media we know her work is far-reaching.

In February, Ben Brown started broadcasting a Podcast of authentic conversations with people who have Tourette Syndrome. Ben lives in the United States and has created a global following, and has had quite a few Canadian guests on his podcast. Ben starts his Season One podcast with a discussion about himself and his reasons for creating a podcast about Tourette, and then goes on to bring 14 sessions of conversations. I cannot express strongly enough how valuable I found these podcasts. It was a learning experience for everyone and so much more awareness has been raised about Tourette. http://tourettespodcast.libsyn.com/

This year Tourette Canada has joined in participating in Tourette Awareness Month (May 15- June 15). The month was devoted to sharing information and raising awareness. The President of Hamilton, Halton and Niagara Chapter, Sophia Dix, organized the first (ever) international event by having Niagara Falls illuminated in teal, the colour of Tourette Awareness, and a fireworks display on June 15th. Family picnics and events were held at the same time on the Canadian and American side promoting understanding of Tourette.

Also showing Tourette awareness was the illumination of the large Winnipeg sign in teal on June 15th. Steve Colle

of Calgary continues to raise awareness and was the guest speaker, sharing experiences about his life with Tourette.

at the Edmonton Chapter’s May gala. Steve has been providing insights into his life with Tourette on Facebook.

Ken Shyminsky and his family continue to raise awareness and recently were interviewed on the well-known Sickboy Podcast. Ken, who has Tourette, advocates for children, parents, and teachers faced with the challenges presented by neurochemical disorders with his work at Neurologically Gifted.

I have named a few well-known people speaking up and raising awareness. But we cannot underestimate our own impact every time we dispel a myth, share an article, have a conversation and/or speak up about Tourette Syndrome. We are all part of a great team dedicated to improving the lives of individuals affected by Tourette Syndrome and associated conditions. Thank you for speaking up and speaking out!

Tourette Canada Newsletter July 2018

JULY 5, 2018

NATIONAL EVENTS

Vancouver Picnic event - July 7th Central Park Burnaby, BC 1pm-3pm

The Vancouver Resource Unit is having a picnic at Central Park in Burnaby, BC. We ask that families bring their own food and enjoy!

Tourette Canada’s 1st Family and Friends Golf Classic July

31st Lebovic Golf Club 14020 Leslie Street, Aurora, ON L4G 7C2 Find more information on the ‘Announcements’ page!

Annual Summer Pool Party August 11th

1pm-4pm. (Rain date is Sunday, August 12th - same time) 2 Shamrock Place, Nepan Cost is $5 a person. RSVP by August 4th to

July newsletter !2New Facebook Group for Adults with TS! It’s important to have a place where adults can express themselves and ask questions to other adults with TS. Now they can!

Introducing our new Facebook group for adults with TS. Search “Adults With Tourette Syndrome in Canada” on Facebook. Photo drawn by summer student Julian H.

TOURETTE CANADA FAMILY & FRIENDS GOLF CLASSIC - JULY 31 We are pleased to invite you to participate in the Tourette Canada Family & Friends Golf Classic, to be held at Lebovic Golf Club on Tuesday, July 31, 2018. We have a great day planned for everyone, filled with delicious food, amazing prize giveaways valued at over $500 a person, and some great on-course entertainment. All proceeds from this tournament go directly to supporting adults, children, & families living with TS/TS+

We hope that this year’s golf tournament will provide support to those who need it most. Every registered golfer will receive a Gift Certificate for 18 holes of golf to be used at this spectacular course at a later date, as well as a Google Home Mini, a pair of Oakley sunglasses, and Titleist golf balls.

Welcome Jill and Katie!

We would like to welcome our 2 summer students. Katie and Jill will be a part of the Tourette Canada Home

office for the next 8 weeks. This opportunity is funded by Canada Summer Student Jobs. Jill will be helping us in Communications and Katie will be reviewing Resource Development opportunities. Both girls will be will in office and helping with administrative duties. So if you are calling the office remember to say “Hello and Welcome” to our post secondary students.

Lunch and dinner are included.

Don’t forget! Members get $50 off registration on golf!

We are still looking for golfers and sponsors! Click to go to the site!

Click to join the group!

NATIONAL EVENTS (CNT’D).

TS Family Summer Event August 26th

The Edmonton Valley Zoo 13315 Buena Vista Road Private event - after hours. Details to follow closer to the date

Bud, Spud & Steak Fundraising Event Thursday,

October 25 TYC Event Centre - Canad Inns Polo Park, 1405 St. Matthews Ave. Winnipeg Doors open: 5:00pm / Dinner 6:00 - 9:00pm Door Prize / Raffle / Silent Auction Tickets: $25.00 per person Email: winnipeg@tourette.ca

London Chapter Fundraising Bingos The London Chapter holds bingo events to raise money to fund the work of the Chapter.  If you are interested in helping at a bingo event, contact Linda at lindajathome@sympatico.ca. Upcoming event dates are: July 22, 2018 and August 5, 2018

July newsletter !3

I Confess. I Have Tourette By: Melissa C. Water

Talking about Tourette syndrome shouldn’t have to feel like a confession. It’s nothing to apologize for, and nothing to feel remorse over.

It’s a big shift when the tics first show up at our door. There’s no welcome mat for Tourette syndrome, but perhaps there should be. While it can feel embarrassing, and some reactions tend to increase that impression within us, there are routes to self-acceptance that don’t have to take a lifetime to achieve.

We may feel inclined to push for a child to advocate about their condition, when in truth, it’s not about pushing, it’s about inspiring.

A few prepared words can speak for us but the hope is one day we find our voice and our place. We are neuro-unique. Let’s prize that, highlight it, and we will find the words to describe ourselves without needing to rehearse the reasons for our differences.

Someone once walked away from me and my tics in a store, pretending not to know me. I could have focused too much on that memory but what made me feel accepted were those who let me know that they were with me and

that my tics didn't bother them, but that, in fact, their experience was only made better by them.

If I’m a child and I’m going to have the confidence to speak out without the fear or shame that comes so naturally, then I need to be shown and made to understand that I’m accepted not only for myself, but for the little beeps and bumps that come with me. Perhaps it’s not about learning to list the symptoms of my Tourette, but to absorb how my unique capabilities are actually enhanced by my condition. I need to know it’s not a bad thing, and that those who love me are not put off by my tics as they only add to the person I am.

I would hope to be imparted the sentiment that I do not stand alone, and that when those in my surroundings learn about my tics, they do not see me differently, but more completely.

It’s not about making Tourette into a show-and-tell, but to encourage a love of oneself that includes the tics, and that isn’t in spite of the condition, but made greater by it.

July newsletter !4

The Best Things About Tourette syndrome By Melissa C. Water

Considering that Tourette Syndrome is recognized as a disability, we may tend to think too much about the condition as a limitation. In solely considering that we may have different capacities than others do, we are actually restricting our perspective.

Our minds are actually statistically more creative and have a higher flexibility in seeing different solutions than the average person. We also often have a very specific and strong talent, which can of course also be creativity. If you look up studies on the topic there is complicated talk of high levels of dopamine, when actually, the reason for why we have this gift is less important than the fact that we have it.

The Eiffel Tower, your favourite painting, or that phrase you love to quote, they were all born of creativity. Some of the most beautiful things are part of the world because someone broke the norm and made it come to be. If I were to chose a talent, it would be this, and we don’t have this gift despite our Tourette Syndrome, but because of it. There’s no shame in neurological diversity. In fact, I feel it’s something to be proud of, as we form a group of people reaching out for each other and

building friendships based on our similarities. Why wouldn’t we do so when those who form this community also have a higher rate of being sympathetic, loyal, and empathetic?

I use the word community a lot. An online dictionary defines community as, “a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.” This is true, in essence, but I like a more personable description: A feeling we find in each other that has no other source. People brought together by a commonality that breaks the barriers of geography, ethnicity and social status. Fighting for the same cause; each other.

The best thing about Tourette Syndrome…is all of us.

July newsletter !5

Tourette Syndrome Awareness Month Recap By: Simon Spencer

This past month, from May 15 through June 15, was Tourette Syndrome Awareness Month. Many Tourette Syndrome advocacy organizations across the world use this month to create awareness initiatives toward public education around Tourette Syndrome. For example, the Tourette Syndrome Association of America allowed you to participate in several ways, online as well as through events, as a way for people to show their support and get

involved.

Tourette awareness month meant as much to everyone at Tourette Canada as it did to the rest of the world. We sold awareness swag online on our shop page, which

included wristbands and sunglasses, as well as honoured the conclusion of Tourette Awareness Month by organizing two innovative events in Niagara Falls, Ontario, and in Winnipeg, Manitoba.

Niagara Falls Event

The Niagara Falls event happened on June 15th where the Falls were lit teal to honour the last day of Tourette Syndrome Awareness Month. Sophia Dix, the

president of the Hamilton Halton-Niagara Chapter of Tourette Canada organized the event with the Niagara Falls Illumination Board. The event began with a fireworks display at around 9:30 pm, followed by the illumination of Canada's greatest set of waterfalls. For all of the volunteers and spectators of Tourette Canada in attendance, it was a beautiful

spectacle and an important salute to those who work so hard to raise awareness about this misunderstood neurological condition. While Sophia was not able to be reached for her take on the outcome of the event for this article, we at Tourette Canada can say with positivity that this milestone event was a step in the right direction for raising national Tourette awareness.

Winnipeg Sign Event

Winnipeg also celebrated the end of Tourette Syndrome awareness month by lighting up the city sign in teal, the official colour of Tourette Syndrome awareness. Winnipeg chapter president, Lorne Perrin coordinated with Mayor Brian Bowman of the city of Winnipeg to get the sign lit. He says that the inspiration behind this celebration was that it “added to TS awareness as (the Winnipeg) Mayor (tweeted about it on social media).” Lorne also stated, regarding Bowman’s tweet, “We needed this added awareness, plus we need local political leaders to be aware, so this was good for us." However, there is still lots of work to be done in terms of raising awareness for Tourette Syndrome in Winnipeg and across Canada for that matter, as Lorne finally stated: "we must continue to expand reaching people (with awareness about Tourette Syndrome) and this was just one method”. See the mayor’s tweet below.

"Although there is still lots of work to be done, both these events were quite innovative ways to honour the conclusion of awareness month and strong ways to start spreading awareness of Tourette Syndrome to those in Canada."

July newsletter !6

Memberships to Tourette Canada Don’t forget to register for our new and improved membership package! As you know, Tourette Canada is a non profit organization that runs programs that benefit the TS Community; however these programs are run directly by support from membership dollars.

A Membership in Tourette Canada: NEW VALUE PROPOSITION

As we move forward we will be asking those people who are using our services to make sure they have an up to date membership. When measuring how your membership dollars are helping and benefiting you, let’s do a quick break down.

A family membership costs .18 cents a day, and an individual membership breaks down to just over .12 cents a day. That works out to 1/6 of the cost of a cup of coffee. We want to be able to run our virtual support groups for youth, parents, moms, and our adults with TS. We also would love to have young children be able to participate in our children's newspaper. These support groups are vital, important, and a form of support for everyone involved, thus we want you to be able to continue to attend different support groups. In return, we are asking that you support Tourette Canada by registering or renewing your membership.

Individual Memberships are $45 and a Family Membership is $65. Your membership will allow you to save 15% off all regular priced merchandise, t-shirts, wristbands, sunglasses on the “shop” page. We are also going to be offering 15% off of the Educator’s Manual and 15% off of the Family Handbook. We are going to show you different attractions that give discounts. There will also be ELearning opportunities for adults and youth.

Membership right now gets you $50 off the price of golf when you register for the Friends and Family Golf Classic. Please do keep in mind that Tourette Canada receives zero core funding from outside sources. Despite this, we are here to continue supporting you and your loved ones. So please take a moment and click the link. You can buy your membership now and we will forward you all of the details once we are ready to print. The discounts on golfing will still be honoured. When we support each other we can do anything.

Click here to become a

member today!

July newsletter !7Volunteer Opportunities! 1. Virtual Youth Group Facilitator - Must be between 17-24 years of age- Able to lead support groups with adolescents while

maintaining patience and adhering to confidentiality- Must be able to lead the group by opening up

conversation, taking appropriate control when/if conflict arises, close group at the end of the session

- Required to log in and open group chat via Zoom (similar to Skype) once a week for approx. 1 hour sessions

- Must have an understanding of TS/TS+

For more information please contact Melissa C. Water at virtual@tourette.ca

Hamilton/Halton Niagara looking for volunteer support! - Newsletter: Assist with quarterly newsletter by

formatting, writing articles, contacting members for their artwork/written items, pictures.

Event/Meeting Planner Assist with planning events in the Niagara and Hamilton region.

Media/Advertising Responsibilities - Search for relevant articles and motivational posters/

quotes and posts on our chapter social media accounts

- Assist with uploading/emailing of event posters and write ups of upcoming events/meetings/workshops.

Administration - Compile and maintain list of medical professionals

that support TS/TS+ patients in the Hamilton Halton Niagara region

- Compile and maintain community supports in the Hamilton Hulton Niagara region; also maintain event/meeting schedule. Take minutes of meeting and distribute.

For more information please contact the president of the Hamilton-Halton Niagara chapter, Sophia Dix at hhnchapter@tourette.ca or Jaslen Noorpuri at volunteersupport@tourette.ca

Other areas in need of volunteer support We are looking for volunteers to help support affiliates that are in development or affiliates that are established, but need volunteers to help support the following communities

- Hamilton Halton Niagara – all three regions – Niagara, St. Catherine’s, Burlington, Winona/Grimsby

- Peterborough, ON - Lethbridge/Medicine Hat, AB - Victoria BC - Montreal QC -Contact Reps Wanted!

We are currently looking for contact representatives across Canada. There is great need for the following areas.

1. British Columbia (Mainland) 2. Vancouver 3. New Brunswick 4. Prince Edward Island 5. Ontario

A. Thunder Bay B. North Bay C. Sudbury D. Greater Barrie Area (Wasaga Beach, Stayner.

Collingwood etc.) E. Kingston region

6. Saskatchewan - Saskatoon - Regina - 7. Alberta (Fort McMurray) - THANK YOU Contact Jaslen Noorpuri at volunteersupport@tourette.ca.

July newsletter !8

Head office contact information Tourette Canada’s office hours are on Monday to Thursday, from 9 am to 5 pm, eastern

standard time.

5955 Airport Rd – Suite #245 Mississauga, Ontario

Canada L4V 1R9

Nick inspires MONTREAL to fundraise in his name

The Montreal Resource Unit has raised money in the name of a Montréal boy named Nick with Tourette Syndrome. Help us recognize Nick for motivating years of awareness toward this cause!

CAMP sTiC TOGETHER DONORS

Help us thank the Montreal, GTA, and Peterborough Chapters for donating to Camp sTiC Together!

Camp sTiC Together is a camp in Peterborough, ON, for youth with Tourette Syndrome.

Also, congratulations to the success of the Peterborough Chapter’s sTiC Together Through the Fog Fundraiser.

Peterborough raised $2647.00 for Camp sTiC Together through the fundraiser! We thank everyone who supported their efforts. Thank you to everyone who participated or donated in the silent auction. A special thank you to the band FOG. We appreciate that you donated your time and

talents in support of Camp sTiC Together.

Canadian Police Curling - A Sponsor of Tourette Canada

We want to also include an additional thank you to all of the participants, sponsors,

donors, and men and women who helped make this season's events happen. Canadian Police

Curling chooses Tourette Canada as their charity of choice and we are very appreciative

of their support.

Telephone: 905-673-2255 Toll Free: 1-800-361-312 Email: admin@tourette.ca

THANK YOU!