Meet Dylan: Author, A-student and athlete!

Brad interviews Dylan from Olathe, Kansas

B: What is your name?

D: Dylan

B: How old are you and where are you from?

D: I am 13 years old and from Olathe, Kansas.

B: How long have you had Tourette Syndrome?

D: I have had TS for 9 years. I was diagnosed when I

was 4.

B: What kinds of symptoms do you have?

D: I have a tic where I blink really hard, one where wrinkle my forehead, I have a shrugging tic, a tic where I lean violently to one side, I twitch my ears, clear my throat, wiggle my toes, and make a coughing sound.

B: What is life like for you living with Tourette Syndrome?

D: It does not usually effect my everyday life because everybody that I hang out with knows about it. Sometimes I will have a lot of tics at once and just have to stop for a moment to let them “tic” and then keep doing what I was doing. Sometimes I do have to explain to someone what Tourette Syndrome is though.

B: What advice can you give other kids who are newly diagnosed with Tourette Syndrome?

D: You are not alone. Talk to your parents about it. Make a plan with your teacher based on your tics. Look on the web and get in touch with others who have TS. These things will really help.

B: What is the hardest thing about living with Tourette Syndrome?

D: The hardest thing is probably getting used to a new tic.  Sometimes I will have a new tic that drives me crazy. For example, when I wrinkle my forehead, it pulls all of the skin on my head forward with it, and so when I wear a hat the brim comes way too far down into my field of view sometimes. It is getting used to these new tics that is the most difficult.

B: What do you think other people should know about Tourette Syndrome?

D: Other people should know that it is impossible to control. If I/we could control it we would stop, but we can’t. We are the ones who have to live with it but if it bothers you just tell me/us and we will acknowledge that. It is okay to be annoyed but not okay to blame us for our tics.

B: What are your strengths and what do you like to do?

D: My strengths are my intellect and my athletic ability. In school I get straight A’s and usually straight A+’s. I do enjoy school but not the homework, however this is probably what is going to carry me through life. My athletic ability is what I enjoy the most. I play baseball, basketball, and football, but football is my favorite sport.

B: What are your goals in life?

D: My goal is to help as many people as I can with my book and when that dies out, to get a job in a field where I can find ways to help people. (find a cure for TS and Cancer 😉 )

Dylan is the author of the book Tic Talk: Living with Tourette Syndrome , A 9-year-old boy’s story in his own words.

Learn more about the book on his website:

Meet Gianni: student, athlete, singer and actor!

Brad interviews Gianni from Aston, PA

B: How old are you and how long have you had TS?

G: I’m 10 and I’ve had tics since I was at least 4. My parents thought they were nervous habits until I was diagnosed when I was 9.

B: What kinds of symptoms do you have?

G: My tics change from day to day. I have vocal and motor tics like rolling and twitching my eyes and making funny sounds. I’ve had tics like not being able to stop slamming my drinking glass on the table or tapping the walls a certain number of times. I’ve had head jerks and arm movements and lots of others. But they haven’t stopped me from doing what I love.

B: What is the hardest thing about living with Tourette Syndrome?

G: I think not being able to control myself in certain instances. Like blurting out something and I have to wait to say what I want until it stops.

B: What advice can you give other kids who are newly diagnosed with Tourette Syndrome?

G: Don’t let TS control you. Don’t let it make you sad or mad. Because you are like any other normal kid. TS doesn’t change who you are.

B: Tell us about your successes and what you love to do?

G: I love baseball. I play and watch baseball. And I love to sing and act. I love the intensity of baseball. Running and hitting and using my skills. I also have a good voice. My mom told me that when you are blessed with a talent you should share it. I’m involved with local theatre (the Media Theatre in Media, PA) and play the saxaphone too. I even like school. I’m a very good student and I enjoy learning new things and reading. Plus I look forward to being with my friends every day at school.

B: Who do you most admire and why?

G: I really admire Shane Victorino of the Philadelphia Phillies. I’ve met him and heard him speak. He dedicates a lot of time to charitable work and is an intense player on the field. He never gives up whether he’s batting or fielding.

B: What would you like most to accomplish?

G: I’d love to learn Italian and go to Italy where my father was born. I’m going to start studying soon.

Hanging out with the “Brads”

[dropcap]T[/dropcap]he “real” Brad Cohen and his alter ego, James Wolk, who portrayed Brad in the Hallmark Hall of Fame movie Front of the Class joined the fun as camp counselors at this year’s Camp Twitch and Shout in Georgia.

Friends since the movie was produced in 2008, both Brad and James have committed themselves to helping kids with TS take some time off and be together  at camps like Twitch and Shout.

James Wolk has attended the last two camps and is a member of the BCTF board.  His portrayal of Brad in the movie was critically acclaimed and he can be seen on television and in the movie theaters this month starring in his own TV show on Fox as well as in a movie with Betty White, Sigorney Weaver and Jaime Lee Curtis.

“Tic”apalooza Weekend is September 24 – 26

“Tic”apalooza takes place in the state of New York each fall.  With 45 campers attending and 25 volunteers helping out, this is their 8th year making a difference for kids ages 7-17 years old.  Each year the camp features a theme.  Survivor was this year’s theme with cabins getting colored bandanas to represent and name their “tribe” and a Saturday evening talent show to show off their talents.

To learn about “Tic”apalooza, click here.

TS Camp Organization continues it’s valuable work

The Tourette Syndrome Camp USA, founded in 1994, is a residential camping program designed for girls and boys ages 8 – 16+ whose primary diagnosis is TS, and to a lesser degree, OCD and ADD/ADHD.

The goal of the camp is to allow children with TS an opportunity to meet other children, share similar experiences and coping mechanisms in a fun, safe and positive environment.

In May, 29 campers and 20 volunteers converged on Chicago, IL for camp.  Read about one camper’s experience here.

Another Successful Camp Twitch and Shout

Thanks to many generous contributions, the summer of 2010 brought more success to Camp Twitch and Shout. Twice as many campers — 111 kids from twenty-three states — as well as fifty volunteers descended on Winder, Georgia to relax and meet others challenged by TS.  The goal of this years camp was to simply have fun!

Here is an article that was in the Gainesville Times Newspaper about Camp Twitch and Shout this summer.

Campers get together and “twitch and shout”!

Board president Brad Cohen and board member James Wolk get down and boogie with campers.

Joshua Center hosts camp for kids

Begun in 1997, this five-day, four-night camp in Lee’s Summit, Missouri provides a fun reprieve for kids with Tourette Syndrome and other neurological conditions.   This year’s camp from June 13 – 17 featured activities like painting, crafts, swimming and games as well as campfire singing and skits.  Ninety-six campers had the chance to meet others like them and found a refuge to be who they are.  Congratulations to the Joshua Center for their 17th successful season.

To read about the impact this camp makes here.

Meet Jacob: future engineer, rocket scientist or magician!

Brad interviews Jacob from Savannah, GA

B. How old are you and where are you from?

J: I’m 12 1/2 and live in Savannah, GA

B: How long have you had Tourette Syndrome?

J: I was diagnosed at age 6, though looking back my mom says she now sees things that were there earlier.  She just thought I was “different”.

B: What kinds of symptoms do you have?

J: Some motor tics, but mostly vocal tics. They can get pretty loud.  A snorting sound, a sneezing sound, one that sounds like I’m gasping…those are some.

B:  What is life like for you living with Tourette Syndrome?

J: At first when I was younger I didn’t understand what was happening, but I knew that I couldn’t help it.  As I got older I started to understand it more and I found out that that is who I am and that’s what makes me who I am.  And if I didn’t have TS I wouldn’t be where I am today.  I’m okay with it.

B: What advice can you give other kids who are newly diagnosed with Tourette Syndrome?

J: You are no different from any other person in the world.  You just have TS which is your challenge.  Everyone has a challenge and TS is yours.  Don’t think of it as something that makes you different from everyone else, but something that makes you unique.

B: What is the hardest thing about living with Tourette Syndrome?

J: The hardest thing is when I have a stressful day and that’s when my tics get bad.  They don’t usually act up that much on a normal day.  It just happens whenever I get upset.

B:  What do you think other people should know about Tourette Syndrome?

J: TS is a neurobiological disorder that is not contagious, because it’s not a disease.  Having TS doesn’t make you any different from anyone else.  It’s like a sneeze, you can’t control when it happens, it just happens.  It’s just something that happens naturally.  There’s no reason to treat anyone with TS differently, it’s just something we were born with.  It doesn’t keep me from doing anything.

B:  What are your strengths and what do you like to do?

J: I’m really good at working with technology.  I usually like to program software, write code, and build things.  I’ve always been interested in engineering, rocket science and astronomy.  I’m really good at magic, which I’ve been doing since I was 5 years old.

B:  What are your goals in life?

J: My goal in life is to educate people on TS and what it is and to make it something that everyone is aware of and for everyone to know that it doesn’t make you any different.  I also want to be an engineer, scientist or magician.

Caruso middle school raises over $10,000

Who says a bunch of teenagers can’t make a difference?  Led by teacher, Julie Witczak, the students at Caruso Middle School (located in Deerfield, IL just outside of Chicago) decided to raise money for the BCTF to help support Camp Twitch and Shout.  They had numerous fundraisers throughout a 3 week period including a raffle for a HP laptop, a penny war, dress up days, T-shirt sales and more.  My brother Jeff stopped by and spoke at an all school assembly and motivated the group. Also at the assembly was a short video from me, a clip from my movie Front of the Class, and a viewing of a 5 minute video from the camp.  Jeff returned three weeks later to pick up the check on behalf of me and the foundation. Great job Caruso students……just know you are making a difference! See picture of the group with Jeff above.

Click here to read the article in the local Deerfield Newspaper.

If other schools are interested in watching Front of the Class and then do some fundraising for the Foundation, please let us know.