Did you miss the 5th annual NJ Walks for TS at Mendham? Catch up on it here!

Since 2010, NJCTS and New Jersey’s Tourette Syndrome community have gathered at Borough Park each November for family fun run/walk to promote TS awareness and support the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Education Outreach Program.

On November 15, hundreds of people braved the cold to have fun, raise tens of thousands of dollars and show the state the strength of the TS community! In case you couldn’t join us, we have all the resources you need to help feel as if you were ACTUALLY there! Here are some links:

More than $32,000 has been raised so far, and donations will be accepted through December 15! YOU CAN DONATE HERE!

The 5th annual NJ Walks for TS at Mendham was a “day to remember” for all!

We have THREE photo albums, each with dozens of beautiful shots in them, on our Facebook page! If you see yourself, tag yourself!:

  1. Photo album No. 1
  2. Photo album No. 2
  3. Photo album No. 3

Do you see something that’s missing from this list? If so, let us know! We’ve got lots more information we could get you!

Ask Dr. Ticcy: Should I monitor my other son for signs of TS?

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

What are the odds of two boys in the same family having Tourette? Our eight-year-old was recently diagnosed with TS and now we are noticing a lot of the same signs in our six-year-old. It’s only been going on for about a month and I know that a correct diagnosis of TS needs to have at least one year of tics. Should we continue to monitor?

Concerned Parent

Dear Concerned Parent,

Continue reading

Youth Ambassador applications now available!

TSA seeks at least one teen and parent/guardian team from each TSA chapter (or at least one team per state not served by a TSA chapter) to attend the upcoming YA Training. The Training for teens and their parent/adult guardian will take place March 10-12, 2015 at the Crystal Gateway Marriott in Arlington, VA.

The TSA Youth Ambassador Training is a two-day comprehensive training program aimed at creating exceptional teen leaders and TS advocates. Youth Ambassadors will receive guidance on speaking in public, on how to give a concise presentation on TS and presentation logistics. The Training also includes participation in TSA’s annual National Advocacy Day.

This is an excellent opportunity for interested teens to learn public speaking, build friendships with other teens involved in the program, gain leadership and advocacy skills, and represent the Tourette Syndrome community as they raise awareness through YA Program activities. Click here to download the application.

Your completed application should be submitted to your local Chapter. Applicants residing outside a chapter area can email or mail completed applications to TSA c/o Michelle Gutmann. All applications must be submitted no later than Friday, November 21, 2014.

YOU can be a part of the “SynapTic Adventure” !!!

With a mission of empowering, educating and funding global independent and student filmmakers, Haydenfilms Institute continues to support local film projects happening in Eastern Pennsylvania. That commitment has most recently led to a partnership with local filmmaker Stephen Dijoseph through a unique fiscal sponsorship and film showcase event.

The showcase took place on May 21, and featured Doylestown, Pa., filmmaker and musician, Stephen Dijoseph, and his multi-award winning short film A SynapTic Adventure: Tourettes and Beyond, a first-person short documentary exploring his personal journey with Tourettes and how living with the syndrome has inspired his creative mind. With hopes of turning the short film into a feature documentary, Dijoseph announced the launch of his crowdfunding campaign and fiscal sponsorship with Haydenfilms Institute during the event.

The campaign is designed to fund Dijoseph’s sophomore project, A SynapTic Adventure: The Creative Force of Tourettes and Beyond. Taking the director’s chair again, Dijoseph seeks to further present “the art in the syndrome”, take a closer look at the creative force that emerges from this mysterious neurological “variance”, and inspire hope in others living with the syndrome.

Henry Nevison, an Emmy-nominated documentarian and panelist at the Showcase explains, “Why I’m so excited to be a part of the film [is because] Stephen’s approach is an exploration of how to tell a story through metaphor.”

Throughout the campaign, contributions can be made on the Indiegogo campaign page for A SynapTic Adventure: The Creative Force of Tourettes and Beyond. You can visit the site to learn more about the campaign and make a contribution. Rewards are also provided to each contributor and include anything from a signed copy of the DVD to a vacation at a Hilton Grand Vacation Resort in Hawaii! The campaign will be active through July 3.

“We are excited to incorporate crowdfunding as a tool to raise awareness for the Tourette Syndrome Community through Stephen Dijoseph’s documentary project,” HFI Founder and Executive Director, Hayden Craddolph says. “We believe that crowdfunded films can bring topics to the mainstream that ordinarily may not receive funding from traditional sources.”

To become involved, become a partner during the campaign or learn more about the Fiscal Sponsorship Program at Haydenfilms Institute, please e-mail Melissa LaRosa at mlarosa@haydenfilmsinstitute.org.

Ask Dr. Ticcy: What about relaxation techniques?

Ask_Dr_Ticcy_Logo-238x250Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

Where can I find more information about relaxation techniques?

Thanks,
F.

Dear F.,

Great question.

Relaxation is important for everyone, and can be especially helpful to someone with Tourette Syndrome. Since stress, excitement and anxiety may intensify or fuel tics, relaxation can assist with symptom mitigation. That is why non-pharmaceutical treatments like Comprehensive Behavioural Intervention for Tics (CBIT) and Habit Reversal Therapy (HRT) are often combined with relaxation therapy/techniques.

To learn more about relaxation techniques try:

1. CPRI Brake Shop Clinic

Video: http://www.cpri.ca/videos/Stress%20Techniques%20F.swf
Handouts: http://www.cpri.ca/uploads/section000162/files/handout_stress.pdf
http://www.cpri.ca/uploads/section000162/files/handout_relax.pdf
http://www.cpri.ca/uploads/section000162/files/breathing%20triangle.pdf

2. Dr. Leslie E. Packer’s website “Tourette Syndrome Plus”
http://www.tourettesyndrome.net/disorders/anxiety-disorders/relax/

3.The TSFC Forum

Try threads like these: http://www.tourettesyndrome.ca/showthread.php?7005-Teach-Yourself-Your-Child-Relaxation
http://www.tourettesyndrome.ca/showthread.php?5029-Relaxation-Techniques

4. Asking an Occupation Therapist or Another Trained Professional

Sincerely,
Dr. Ticcy

Top 13 TS Moments of 2013

2013 was a big year for the TS community both in Canada and internationally. Here’s the TSFC’s list of the biggest TS moments of 2013. Do they match yours?

 

13. Former Idol Contestant James Durbin Releases First Single from Second Album

JamesDurbinCoverx-large

12. Man with TS Kicked Off Plane for Vocal Tic

screenshot-111. Carlos Guevara Wins Hearts on X Factor

23592145_BG210. Young Man Faces Eviction for Tics, TSFC Weighs In

eviction9. The 5th Annual Trek for Tourette Brings Canada Together For a Day

560131_10150677600424681_1123930280_n8. The DSM-5 Releases New Diagnostic Criteria for TS

7. “Building Your Toolbox” at the National Conference on Tourette Syndrome Plus in Mississauga, Ontario

IMG_0008 Continue reading

Changing lives with “The Space Between You And Me”

The Space Between You And Me is a powerful art installation that moves people who experience it. It’s a captivating exhibit, managing to express what it’s like to have Tourette Syndrome through footage of interviews with youth with TS and interpretive dance inspired by the disorder, all projected onto a series of transparent and semi transparent screens and mirrored in various reflective materials.

At a recent exhibition attended by hundreds of students, one teenager said that The Space Between You And Me had “changed her.” Evidence of the profound effect this project has on teenagers can be found in a blog on the official project website, where teens share their own inspired thoughts and feelings on a range of issues.

Why does The Space Between You And Me strike such a chord with teenagers? No doubt it has something to do with the installation’s theme, and the special young person who sparked its creators. From the official website:

Paige Tomashewsky, the teen who inspired the creation of the project, suggested the title for The Space Between You And Me. Paige’s TS has forced her at times to keep a space between herself and others for their protection. Students always left a space around her at assemblies and in line-ups. Although she always understood the need for this, it was still very painful.

Even given theses boundaries she has a lot of friends who know the price of being in her space but they willingly accept it. The space is the physical and emotional gap that TS creates for Paige. Sometimes it is to protect her from people’s judgments or to protect others from the dangers her tics can cause. Continue reading

Tourette research helps families, but we need more of it!

Awareness. Acceptance. Action. Advocacy. All needed when it comes to informing people about Tourette Syndrome at the national, regional, state and local level. Our Facebook page (give us a “like”! :) ) is dedicated toward these very things, especially when it comes to supporting the proposed federal Tourette Syndrome legislation.

Yes, we have a request of you. And no, it won’t take more than just a few seconds. If creating a better future for children with Tourette Syndrome is important to you, then there should be no reason why you don’t click here and support the proposed federal Tourette Syndrome legislation.

You can leave your Congressional representative a note just like this one and show them that Tourette Syndrome legislation is important to you, just like it is in the beautiful state of Washington:

NancyLouiseFroh in Washington’s 6th District

I now realize that my uncle, who served in WWII, must have had Tourette Syndrome. Over the years, we noticed that he would make inappropriate and loud noises at various times. He would try and cover it up like it was a joke, but now I can see he must have suffered greatly from this condition. In those days, they really didn’t know that much about this condition. My uncle has passed away several years ago, but seeing my granddaughter with similar inappropriate noises, it must be a gene passed down through the family. My grandfather’s sister was placed in a mental institution at age 18. I now wonder if she suffered from this, too. She remained there until she passed away (in her 70s). My heart goes out to her, because she must have suffered greatly, too. I’m so glad that research will now move forward to find a cure and its cause. It is about time.

My granddaughter is Jennifer Smestad, Miss Arizona. She is now leading a very positive and productive life because Chinese acupuncture has made a big difference in her life. She has been in remission, since her treatments along with Chinese medicine. Jennifer is trying to make a difference for those suffering with this condition by her continued advocacy in awareness, as well as finding a cure and a cause.

Also, be sure to read this awesome take on the legislation from KateE, who does an amazing job with the Tourette Syndrome Awareness Movement page on Facebook!