Help ensure renewed funding of Tourette Syndrome at the US Center for Disease Control and Prevention (CDC). The deadline is March 25^th and you can help – Click here to take action now.  Click here to view a copy of the Congressional Letter.

Contacting your Members of Congress will only take 1 minute but will result in $2 million dollars going to the CDC for a Public Health Education and Research Program on Tourette Syndrome.

Between now and Wednesday, March 25^th Call and Write to your US House Representatives and US Senators to voice your support. Enlist the help of your friends and family. Ask them to reach out to their elected officials and urge Congress Members to sign onto the Congressional “Dear Colleague Letter;” to renew funding of Tourette at the CDC.

WHY THIS IS IMPORTANT

The purpose of the CDC Public Health, Education and Research Program is to advance scientific knowledge about the prevalence, risk-factors and treatment of Tourette as well as to educate physicians, health care professionals, and school personnel, as well as those who have Tourette, and the general public about Tourette Syndrome.

• Back in 2000, Congress passed the Children’s Health Act (P.L. 106-310), in which Title 23 authorized a Public Health Education and Research Program on Tourette Syndrome.

• Annually the national Tourette Syndrome Association (TSA) must request $2 million dollars within the federal appropriations process for the continuation of The Tourette Syndrome Public Health, Education, and Research Program at the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC.

• Senator Charles Schumer and Representative Leonard Lance are circulating a Congressional Letter to their Colleagues; asking Members of Congress to sign their letter in support of continued funding of Tourette Syndrome at the CDC. Offices must sign on by March 25^th to get funding in the Fiscal Year 2016 Labor, Health, and Human Services, Education and Related Agencies (LHHS) Appropriations Bill.

It is through the voices and stories of our members that we are able to inspire leaders and policy makers such as Senator Charles Schumer, Congressman Leonard Lance, and other Congressional leaders to do what they do; “Represent the Countless Americans living with TS.”

Call and write your Members of Congress as soon as possible to urge them to sign onto the funding letter on Tourette Syndrome. Thank you in advance for your efforts. Let us know when you take action. Contact, Elridge Proctor, TSA’s Vice President at 202-408-7009 or Elridge.Proctor@tsa-usa.org.

4th Annual Fun in the Sun at Rainbow Falls Water Park in Elk Grove Village

Sunday, August 10, 2014 12:00 PM to 4:00 PM

You’re invited to join us for our 4th Annual Fun in the Sun at Rainbow Falls Water Park. This family event is OPEN TO EVERYONE affiliated with Tourette Syndrome (TS).   There’s something for everyone, a zero depth area for tots, exciting slides and a lazy river!

We have reserved Mango Grove and TSA-IL will provide a pizza lunch and beverages.   Just bring your wonderful self, family and/or friends, towels, sunscreen and register below.

COST:  $9 admission per person

Amenities

• Plenty of Free Parking
• Reserved Group area – MANGO GROVE
• Bathhouses – complete with changing and shower areas
• Hideaway Cafe – with yummy food and treats
• TSA-IL will provide a pizza lunch and beverages
• You can also bring your own food and refreshments

Once at Rainbow Falls, our group will meet in the reserved – MANGO GROVE

Register Now!

BONUS – the first 20 families with paid registration will receive TSA Apparel (one per family!!) Don’t delay register today!

Rainbow Falls Water Park
220 Rev. Morrison Blvd
Elk Grove Village, IL 60007

CANCELLATIONS DUE TO WEATHER

If the event is cancelled due to poor weather conditions, we will send registrants an email in the morning.  If the event is cancelled by TSA-IL, your money will be refunded.

Contact
Sue Lester
Tourette Syndrome Association of Illinois (TSA-IL)
847-526-8660
tsaillinois@yahoo.com

For additional information about TSA-IL, visit tsa-illinois.org

Matt was very misunderstood in his early school years. His teachers mistook his behaviors as purposeful not knowing they were tics. Because he could not control them and the teachers focused on them as behaviors, he was placed in a therapeutic day school (known as the most restrictive educational environment) which was over an hour bus ride from his home.   His classroom mainly focused on therapies for autism. Even though professionals ruled out the diagnosis of autism, his teachers at this specialized school also misunderstood his tics to be purposeful behaviors and responded to them inappropriately.

Matt’s early school-life was certainly a struggle; however, a proper diagnosis was the key that changed everything. Because his parents knew he still needed a proper diagnosis, they kept researching and looking for answers. Eventually they realized he fit the diagnosis of TS. Because doctors had previously given other diagnoses, it was difficult to convince the school that Matt had TS and that they needed to change gears for the proper treatment. Finally a doctor was found that understood TS, gave the proper diagnosis, and understood how it should be treated medically, socially, and educationally.

This was the beginning of a very positive trend. His parents attended a local support group for TS and learned even more about how to support their son. Soon after this, Matt was transferred to his home school and was quickly mainstreamed. Every year since, TSA-Illinois has provided in-services and support at his schools. This, along with support from doctors who understand TS, has been instrumental to his success.

Matt learned at an early age to advocate for himself and each semester conducts his own peer in-services. He enjoys public speaking and excels in advanced high-school courses. He is also a skilled violinist for his school orchestra and has composed, performed, and conducted his own music. He enjoys tutoring violin for his former middle school and readily volunteers his time to play in his church orchestra.  He plans to pursue a PhD. in the science field.  He passionately spreads the word about TS by publishing his own educational YouTube videos in English and in German.  He has received positive acknowledgments world-wide.  Matt’s plans are to continue to advocate for those with TS as well as provide public education as he knows first-hand that knowledge is the key to success.

Battling His Brain

By Joe Vanden Acker

It is the day that changed Davis Ogilvie ’15. Changed his life.  Changed who he was. Changed everything.

The Lawrence University baseball standout was a sixth grader in fall 2004 when his family was on vacation in Walt Disney World. Davis was experiencing one of those brutal Florida days where the heat and humidity can get the best of you.  Davis thought he was just feeling the effects of the stifling temperatures.

Before Davis knew it, his hands were clenched and his arms were pressed to his chest. “I was in and out of realizing what was going on,” he said.

Understandably alarmed, Doug and Debbie Ogilvie took their son to a local hospital. After extensive tests with no clear answer, the Ogilvies returned home to Libertyville, Ill., a few days later.

More doctors and more tests and a trip to the neurologist led to the diagnosis of Tourette syndrome.  For more thaneight years, Davis has lived with Tourette syndrome and has been able to learn and play at a very high level despite the challenges.

Tourette syndrome is a neurological disorder that manifests itself during childhood. According to the Tourette Syndrome Association website, the disorder is defined by multiple motor and vocal tics. Davis’ disorder was at its extreme when it first appeared.

“Not only was it there, but it was there so bad, no one at the time could tell us what it was,” Doug Ogilvie said.  “We have these tall kitchen stools, and if you weren’t watching him, you would turn around and he would be standing on top of a stool. And he wouldn’t know how he got there. … Through the years, it’s still been there, but not to the magnitude of when it first came about.”  TO READ MORE……..