JUNE 4, 2018

National Newsletter June 2018 NATIONAL EVENTS TS Edmonton 10 Things You Didn’t other people’s rights (e.g., Family being aggressive, bullying, Event - Know About Tourette damaging property on Sunday Syndrome purpose, stealing, breaking June 10th serious rules). Conduct Bronx Bowl 12940-127 St. 1. Only 10% of the disorder, according to this West, Edmonton, AB people with TS have no study, can occur in people with other associated TS but this is related to the Winnipeg disorders. This is called presence of ADHD and a family Chapter pure-TS or TS-only. history of aggressive and Event - violent behaviour. Picnic in the Park 2. Though rare, some people with TS have a palatal . June 10th This tic involves the soft palate moving 8. Depression, which is Assinboine Park Winnipeg, common among people with while simultaneously hearing a clicking sound. Manitoba TS, is a lifetime risk for 10% of FREE to Attend -but RSVP 3. While TS is genetic and occurs across all cultures, people with TS. Depending on REQUIRED by: June 6, 2018 some differences have been noted between cultures with the study, between 2-9% of RSVP via EMAIL to: regard to certain accompanying conditions like anxiety, people with TS have [email protected] include # of people depression, LD, impulse control, aggression, ODD, and depression. attending. conduct disorder. 9. Some people with TS can have retching or vomiting . Shine a Light on Tourette 4. (socially inappropriate language) and Syndrome- (socially inappropriate movement or Niagara Falls gestures) are not unique to . They 10. Tourette Syndrome, which Illumination appear in other conditions, including following a stroke, is present in 1% of the June 15th Lesch-Nyhan Syndrome, epilepsy, and fronto-temporal population, affects more Queen dementia. people than Epilepsy (0.6% of Victoria Park, the population), Multiple Niagara Falls, ON 5. People with TS are more likely to have a premonitory Sclerosis (between 1 per 500 Please meet at Queen sensation (meaning a feeling or physical indication that people and 1 in 1000), and Victoria Park at 9:30 to the tic is about to happen) for complex vocal and motor HIV (308 per 100,000). mark the end of tics. Complex tics involve multiple muscle groups or more awareness month by elaborate speech, whereas simple tics are sounds or Is there anything that you lighting up the Falls in single-muscle movements. would like to share about teal followed by a display Tourette Syndrome? Please of fireworks. Raffle / Silent 6. People who have coprolalia and/or copropraxia are contact Simon Auction. This event will [email protected] more likely to have severe tics and associated conditions. include Canadians and Americans and will be 7. A 2015 study found that conduct disorder is not an celebrated on both sides integral part of Tourette. Conduct disorder is a behaviour disorder where children or youth go against the rules or Tourette Awareness 2

Tourette’s is that Gilles de Why Tourette and Not la Tourette, after whom sTiC Together Through Tourette’s? the disorder named, didn’t the Fog June 21st. even have Tourette Golden Wheel Restaurant You’ve probably noticed that there are almost as many Syndrome (unlike, for 6725 Highway 7, names for Tourette Syndrome as there are tics (well, example, in the case of Peterborough ON. maybe not quite that many). These include: Lou Gehrig’s disease). Dr. Band and Silent Auction - Tourette was the first Tickets are $10 (Click the title physician to report it. In of the event to go to the - Tourette Syndrome Facebook event page) - Tourette’s Syndrome this way, the possessive - Tourette’s disorder marker is inaccurate and - Gilles de la Tourette Syndrome misleading. - Tourette Tourette - Tourette’s So we’re left with Canada’s - TS Tourette. We recognize 1st Family - GTS that many members of our and Friends Golf community, as well as the Classic public, are used to saying Lebovic Golf Club If you’re grammatically inclined, you may have wondered Tourette’s and will 14020 Leslie Street, why some use the possessive form (Tourette’s), while probably go on doing so others do not (Tourette), and whether it matters at all. Aurora, ON L4G 7C2 for quite awhile. Again, The truth is, what really matters is that our message (Please see information that’s okay. We’ll all reaches as many Canadians as possible: what TS is and in the box below) continue to make progress what it isn’t. So long as these conversations are no matter what we call it. happening, that’s great. It’s what’s most important. That Tourette Canada has said, we at Tourette Canada always use Tourette, never chosen to reflect the Tourette’s. It’s our policy (we also never use terms like current medical direction afflicted, victim, suffering, disease or Tourette child, but in our work as we strive to those are subjects for another blog post). educate Canada about TS Tourette awareness to the best of our ability. swag available Many members of the medical community want to end We hope you’ll join us in on our website!! the use of possessive markers (the ’s in Tourette’s) for the the years to come! names of disorders, diseases and conditions entirely. Their view is that it’s cumbersome and inconsistent,

especially when different terms appear in medical publications, and we agree. The main issue with using

TOURETTE CANADA FAMILY & FRIENDS GOLF CLASSIC 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 our golf tournament will go towards Tourette Canada. 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, a Google Home Mini, a pair of Oakley sunglasses, and Titleist golf balls.

Don’t miss out on our Early Bird Draw - If you are registered before June 15th you will be entered into a draw to win an iPad.

Many levels of sponsorship still available! Click to go to the site! An Important UpdateMembership 3 About Memberships to attractions that give Tourette Canada discounts. There We will be rolling out a new membership will also be E- NATIONAL EVENTS package. It is important to understand that the Learning (CNT’D). programs we run are directly supported by Opportunities for Membership dollars. So as we move forward we adults and youth. will be asking those people who are using our Bud, Spud & Steak services to make sure they have an up to date Membership right Fundraising Event Thursday, October 25, membership. now gets you $50 2018 TYC Event Centre off the price of golf - Canad Inns Polo Park, 1405 When you break it down a family membership when you register St. Matthews Ave. Winnipeg cost .18 cents a day, and an individual for the Friends and Doors open: 5:00pm / Dinner 6:00 - 9:00pm membership breaks down to just over .12 cents Family Golf Classic. Door Prize / Raffle / Silent a day. That works out to 1/6 of the cost of a cup Enroll before June Auction Tickets: $25.00 per of coffee. We want to be able to run our virtual 15th and get your person Email: [email protected] support groups for youth, parents, moms, and name entered into a our adults with TS group. We also want young draw to win an children to be able to participate in our iPad! children's newspaper. We want you to be able to continue to attend these different support Tourette Canada groups. In return, we are asking that you receives zero core funding from outside sources. support Tourette Canada by registering or We also do not receive any government renewing your membership. Individual funding. It is important to know that we are Memberships are $45 and a Family Membership here to support you and your loved ones. We is $65. Your membership will allow you to save want to be able to continue supporting you. So 15% off all regular priced merchandise, t-shirts, please take a moment and click the link. wristbands, sunglasses on the “shop” page. We are also going to be offering 15% off of the A detailed Membership Package will be in next Educator’s Manual and 15% off of the Family months newsletter. You can buy your Handbook. We are going to show you different 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. School’s out!Meet 4our co-op student, Julian! Routines on weekends The staff at the Tourette Canada’s and in the summer home office, found themselves in the company of a co-op student named As school winds down and summer vacation Julian H. Julian, or Jules, as he’s starts, you might find these tips helpful known at the office came to help us on the communications side of things.

Many parents notice that their children with TS/TS plus have more difficulty with their behaviour on the weekends, during holidays, and during the summer. For some of these children, Julian himself said of his first day “I thought it was going to be a better the lack of routine on these days causes uncertainty and an experience than my previous co-op. increase in symptoms. This (co-op), I thought, was going to be exciting. I’d also rather be around Routines can be followed even when school is out. Create a people who know about Tourette Syndrome”. routine that works for these days. Some families find that getting up at the same time on weekends and holidays works Julian designed graphics to be distributed on our various social media best for them. Others find that they need to ease up on their channels. Around the time he arrived, we were just getting ready to child’s wake up time, but that they need to keep a consistent launch a campaign for Tourette Syndrome Awareness Month, which order to the events of the day. runs from May 15th - June 15th. Julian was an asset to our team and he was extremely helpful in organizing our TC tidbits for Tourette Syndrome awareness. Remember that your child feels more secure when he knows what will happen next in the day. Incorporate a routine around While our very own Melissa C. water was working on our first the events that happen every day. These events include meals, newsletter, Jules was tasked with finding and creating images for it. He assigned chores, trips to the park, sports, and bedtime. created his own images and graphics that represented the virtual support communities Melissa runs. He hand-drew the image, which was Maintain your planning calendar over the summer, and post all scanned into a digital format. Melissa included the image on the virtual planned outings, special events, and trips. support group page of the last issue. Julian also helped us find interesting facts about Camp Maple Leaf that we can share to social media in promotion of Camp sTic Together. More information can be found in “Understanding Tourette syndrome: A Handbook for Families”, available online! Julian is enjoying his placement with us. We are happy that we were able to support him as he completes this stage of his education. Volunteer Opportunities 5

Volunteer Opportunity! Event/Meeting Planner 1. Virtual Youth Group Facilitator Assist with - Must be between 17-24 years of age planning events in the Niagara - Able to lead support groups with adolescents and Hamilton while maintaining patience and adhering to region. confidentiality Media/ - -Must be able to lead group by opening up Advertising conversation, taking appropriate control when/if conflict arises, close group at the end Responsibilities of the session - Searcher relevant articles and motivational - Required to log in and open Group chat via posters/quotes and posts on our chapter Zoom (similar to Skype) once a week for social media accounts approx. 1 hour sessions

- Assist with uploading/emailing of event - - Must have an understanding of TS/TS+ posters and write ups of upcoming events/ meetings/workshops. - For more information please contact the Tourette Canada Home Office at Administration [email protected]

- Compile and maintain list of medical Hamilton/Halton professionals that support TS/TS+ patients in Niagara looking for the Hamilton Halton Niagara region volunteer support! - Compile and maintain community supports in the Hamilton Hulton Niagara region; also - Newsletter: Assist with quarterly newsletter maintain event/meeting schedule, take by formatting, writing articles, contacting minutes of meeting and distribute. members for their artwork/written items, pictures. For more information please contact the president of the Hamilton-Halton Niagara chapter, Sophia Dix at [email protected] or Jaslen Noorpuri at [email protected] Volunteer Opportunities 6 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. OntarioNorth Bay A. Thunder Bay B. Sudbury C. Greater Barrie Area (Wasaga Beach, Stayner. Collingwood etc.) D. Kingston region 6. Saskatchewan - Saskatoon - Regina - 7. Alberta (Fort McMurray) Big Thank You To… 7 Shout-outs

MONTREAL CHAPTER

The Montreal Chapter has raised money in the name of and to support the cause of a Montréal boy named Nick with Tourette’s syndrome. Help us congratulate Montreal chapter on this achievement and to donating $5000 to Camp sTiC Together!

The Hardworking Volunteers of Trek Canadian Police Curling - A For Tourette 10th Anniversary! Sponsor of Tourette Canada

Thank you to all of our hard-working We want to also include an additional volunteers. Our final numbers for Trek thank you to all of the participants, 2018 are in and the total amount raised is sponsors, donors, and men and women $90,770!! who helped make this season's events happen. Canadian Police Curling We know Trek can be a very busy fundraiser but we chooses Tourette Canada as their could not do it without each of you. We are very grateful to all of our donors and sponsors, our Lead charity of choice and we are very Coordinator Janet Rumsey and every affiliate that appreciative of their support. participated.