Can you help me with my research?

I am currently an undergraduate student studying Special Educational Needs and Inclusion at Bishop Grosseteste University. I am currently working on my undergraduate dissertation and it is at this point that I need your help!

I am looking for pupils to participate in a research study looking at the relationship between Tourette Syndrome and education, and I am looking for students personal experiences to inform my study. If you are willing to take part I will ask you to fill out a questionnaire which outlines your experiences with Tourette Syndrome and your experiences in school. No one other than me will have access to any of your personal information, and all names will be removed in the research in order to keep you anonymous.

If you have any further questions before completing the questionnaire please feel free to email me at b1202163@student.bishopg.ac.uk.

I would be truly greatful to hear your experiences, as I want to fully explore any relationship that can be found between TS and education, to see if there’s anything that we can do to to make education better for everyone!

Learn about my Ugandan adventure!

Ever since I can remember, I’ve wanted to go to Africa to work with children, to volunteer. When I started attending the Primary Teachers College in the Netherlands four years ago, that dream changed into teaching children in Africa. But there was always this little voice in my head that said, “with my Tourette’s, I will never be able to go to Africa for a long time.” A few weeks, maybe, but not for months.

I was always so envious of people who said they were going away for a few months, or even a year, to experience a new country, a new culture and to volunteer for a good cause. I never thought that could be me. It would be too exhausting, there were too many ‘new things’. I would be out of my comfort zone, without my house, parents, sister and friends. I wouldn’t have the basic things I thought I needed.

Last year I got the opportunity to go to Lira, Northern Uganda, for two weeks, with a Dutch organization called Edukans. It was a trip in which student teachers from the Netherlands and Uganda would work together. That I could do, I thought to myself, it was only two weeks. But being there, it hit me: there is no reason why I can’t do this for months! There is no reason why I couldn’t be happy volunteering and working with children, here, in Northern Uganda. I even realised that there was no reason why I couldn’t live here forever.

So I made a decision. I took a leap of faith and went back to Uganda. This time without a group. It was just me.

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NJ Walks for TS really making a difference all over New Jersey

My name is Sarah. I’m a senior in high school, a Youth Advocate for the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) and Youth Co-Chair of the 5th annual NJ Walks for TS event in Mendham, NJ.

I am writing to urge you, your family and friends to come out and join us when NJ Walks for TS at Mendham on November 15. Click here to register.

All proceeds from this very special event support the NJCTS Education Outreach Program which provides information and training to teachers, doctors and students statewide to ensure greater understanding and acceptance for kids and adults living with Tourette Syndrome.

I have been a part of this program for the past four years and have personally presented a message of acceptance and stigma-conquering facts to well over a thousand school kids, teachers and doctors.

Not only does the program educate professionals but it provides kids like me with an opportunity to develop skills as a public speaker and advocate; and it also strengthens my ability to deal with my own Tourette Syndrome diagnosis.

Parents of kids with TS also present workshops to teachers and doctors and TS experts join our team to present grand rounds at hospitals in every part of New Jersey.

To date, more than 60,000 NJ teachers and doctors have attended our presentations. Please help this program to continue to grow by giving generously to our Walk and throughout the year.

We are happy to provide any additional information on this and other NJCTS program offerings. Thanks for helping us make an enormous difference in the lives of so many kids and families.

See you on November 15 when NJ Walks for TS at Mendham. Here is another way you can participate, too!

Fundraising plays a big role in Tourette Syndrome education and awareness

We don’t know who will cross the finish line first on November 15 in the 5th annual NJ Walks for TS at Mendham, but “Christian’s Crusaders” are in the lead for fundraising, with $6,600 raised to date, and Lee Concepcion is challenging other teams to “bring it on!”

“This is bringing out my competitive side,” she admits, “and I want to win, but I have to let others know how easy it is to form a team and raise money. After all that my family has received from the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS), we couldn’t pass up this opportunity to let other TS families have the benefit of the same support.”

Nine-year-old Christian Concepcion was diagnosed with TS in August 2013. Lee recognized the tics — jerking motions so severe that she became concerned that he would injure himself – but she wasn’t prepared when her pediatrician said it could be TS.

“I burst out crying,” she says. “The next few months were a nightmare, emotionally. I became obsessed with looking up all the information I could find on TS.  We contacted the NJCTS TS Clinic at Rutgers, and by October, we were seeing a clinician and Christian was participating in a workshop on social skills.”

TS Teen Ambassador program Changes Lives

When Christian’s TS intensified, Lee contacted NJCTS again.

“Our school has been wonderful, and when I heard about the Youth Advocate Program, I called NJCTS,” she says. ”That was all I had to do.  They set everything up with the school, and they sent us Tommy Licato — a demi-god.”

Licato, who is one of the Walk’s youth co-chairs, gave a simple, direct presentation that has inspired Christian to already look forward to becoming an NJCTS Youth Advocate himself.

Money Raised Through Family, Friends, Employer Match

“It’s been so fun and easy to raise money for the walk,” says Lee.  “My aunt put a notice in her church bulletin. Christian’s school is holding a dress-down day, with the money going to the team. And my husband’s employer has a matching program for employee donations.  NJCTS wasn’t on the list, but it was easy to add it.”

“The difference the NJCTS Youth Advocate program has made for our family is overwhelming,” adds Lee. “That’s why I feel so strongly about giving back through this walk. There is no way I would ever want another family to think that TS is something you can’t get through.  Thanks to NJCTS, we know we can, and we know that our son’s future is limitless.”

Please stand up and walk the walk by joining NJCTS and scores of youth advocates from across the state to promote awareness, acceptance, action and advocacy of Tourette Syndrome and its associated disorders. This event will strengthen the statewide education outreach and peer advocacy programs of NJCTS, which supports children and families with TS, ADHD, OCD, anxiety disorders, Asperger’s Syndrome and other neurological disorders.

It’s not too late to walksponsor a team, or donate.

Teens and specialists deliver critical Tourette Syndrome training in New Jersey

Physicians spend a lot of time in training, but when it comes to understanding the challenges of Tourette Syndrome, there’s a “gap”, according to Tolga Taneli, M.D. The psychiatrist specializes in the neurological disorder characterized by involuntary sounds or movements known as tics and he partners with the New Jersey Center for Tourette Syndrome (NJCTS) to educate healthcare professionals.

“Tourette Syndrome is diagnosed too late- from its first symptoms to diagnosis sometimes takes a decade or more,” said Dr. Taneli, “There is a training gap in physicians to make them able to recognize early symptoms.”

He emphases a “critical” need to train first-line physicians like family practitioners, pediatricians and internists- doctors who are more likely to encounter a patient before they seek the help of a specialist.

Because of its complex physical and cognitive manifestations, understanding Tourette Syndrome (TS) goes well beyond tics. Since 2011, NJCTS has delivered Patient-Centered Medical Education presentations to hospitals throughout New Jersey and beyond. The program consists of a specialist with TS expertise and teen advocates, living with TS, who are able to convey the emotional toll and communication challenges in a way that transcends clinical terms.

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