Delaware House Recognizes Tourette Syndrome Awareness Month 2016

For the second year in a row, the Delaware House of Representatives recognized Tourette Syndrome Awareness Month, which takes place from May 15th-June 15th, 2016.  My son Jacob and I attended the legislative session where State Representatives Debra Heffernan and Jeff Spiegelman introduced the legislation.  The House unanimously voted in favor of House Resolution #33.

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Above, Kevin and Jacob in picture taken by Delaware State Rep. Kim Williams.
Below, the House Resolution.

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Thank you, once again, to State Reps. Heffernan and Spiegelman for this honor for a very misunderstood and confusing disability. And thank you as well to Susan Breakie, the Delaware Tourette Association of America Chapter Leader to inviting Jacob and I to this momentous day!

Jacob got to meet a lot of legislators and even got a lollipop from State Rep. Michael Ramone! Unfortunately, we were not able to meet with Governor Markell this year or get to play with Speaker of the House Pete Schwartzkopf’s gavel.

On Saturday, the Delaware Tourette Association of America will be holding the Delaware Tourette Awareness Walk at Glasgow Regional Park in Glasgow, DE:

Join us in Making a Difference with Every Mile!

The Delaware Tourette Awareness Walk in Glasgow Regional Park was organized to raise awareness and funds for the Tourette Association of America. When you register for the Delaware Tourette Awareness Walk you are supporting the Tourette Association’s mission to make life better for all people affected by Tourette and Tic Disorders! Encourage your friends, family, co-worker’s and neighbors to donate on your fundraising webpage so that we can reach the team’s collective fundraising goal! The funds raised will benefit research, foster awareness, and support necessary programs.Together we can make a difference!

Registration Fees
•Early Bird Registration (Age 13+/Adult) — $25
•Day of Event Registration (Age 13+/Adult) — $35
•Children age 6-12 — $15
•Free for Children 5 and younger

Online Registration is Recommended. Online Registration closes at noon on Thursday May 12th, 2016.

What You Receive

Each participant will receive a Team Tourette T-Shirt in the size of their choice and a Team Tourette medal. There will be free food, drinks, and fun for the entire family!

Event Time/Date

Check-in/Day-of registration will begin at 9:00 a.m. and the walk will begin at 10:00 a.m. on Saturday, May 14th 2016.

Event Location

Glasgow Regional State Park

Rt 896 & Rt 40, Newark DE 19720

– See more at: http://getinvolve.tourette.org/site/TR?fr_id=1090&pg=entry#sthash.6YSsSBcQ.dpuf

An Important Announcement From The Tourette Association of America

The Tourette Association of America is looking for help with pending research legislation at a national level as well as more inclusion of Tourette Syndrome in a potential reauthorization of the Individuals with Disabilities Education Act (IDEA).  Please follow the links at the bottom of each announcement to get your elected officials to participate in a very important briefing on the research legislation and so they understand how Tourette Syndrome severely impacts students with this disability.

Dear Tourette Association Members, Family and Friends, 

The Tourette Association of America has a great opportunity to advocate to be potentially included in federal legislation known as, H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. This bill will support systematic epidemiological research, data collection and analysis of neurological diseases at the CDC.

 What The Bill Does:

This bill would enhance and expand infrastructure and activities to track the epidemiology of neurological diseases including the incidence, prevalence, and other information and incorporate this into a National Neurological Diseases Surveillance System. In addition it would facilitate further research on neurological diseases at the Department of Health and Human Services (HHS). 

Why This Is Important for Tourette:

Prevalence data on Tourette Syndrome in children is inconclusive and contains conflicting results. In addition, there is little to no information on the impact of the disorder in adults. This bill could establish the prevalence of Tourette and help close the gap between identified and undetected cases, especially among ethnic and racial minority populations in the U.S. The bill could also provide for surveillance of Tourette in the U.S. that could provide insights into the long-suspected environment role in the development of the disorder. 

TAKE ACTION NOW:

On September 16, 2015 the Tourette Association of America and a Coalition of 11 Non-Profit Neurological Disease Associations will be holding a Briefing for Senators and their staff on H.R. 292/S. 849 The Advancing Research for Neurological Diseases Act of 2015. The briefing is sponsored by the Tourette Association in collaboration with the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, and United Spinal. 

Most recently, the bill passed out of the House of Representatives as part of the 21st Century Cures Act. In order to make this bill a top priority in the Senate we are asking that you, your family and friends to email your Members of Congress to ask for both support of Tourette Syndrome and the Advancing Research for Neurological Diseases Act; while inviting staff members to attend the Congressional Briefing on September 16th

Write your Members of Congress and urge them to support this initiative by personalizing our form letter. Email Elridge@Tourette.org to let us know you took action. Thank you in advance! 

Click here to TAKE ACTION NOW!

And the second announcement:

Dear Members, Family, and Friends,

Since 2006, Members of the Tourette Association have witnessed the powerful role policy has in supporting students with disabilities when Tourette Syndrome was included within the Individual with Disabilities Education Act (IDEA).  As Congress discusses ways in which to improve the education system, hold students and teachers accountable we invite you to voice your concern and relay 3 specific recommendations on how to meet the needs of students with Tourette and Tic Disorders.

Why This is Important!

According to the US Center for Disease Control and Prevention (CDC) 80% of children with Tourette have additional health conditions; 50%-70% have co-occurring Attention Deficit-Hyperactivity Disorder (ADHD) and 30-50% have Obsessive-Compulsive Disorder (OCD). Individuals with Tourette routinely have higher rates of anxiety, depression as well as learning disabilities. These conditions can have a negative impact on a person’s education, career and social life; decreasing their quality of life. Please advocate for Tourette and Education Services.

 Click Here to Advocate Now!

 

Tourette Syndrome Awareness Month Begins TODAY!!!!

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Tourette Syndrome Awareness Month begins today, May 15th, and runs through June 15th.  In support of those with Tourette Syndrome, please wear teal on Tuesdays during TS Awareness Month!  The Tourette Syndrome Association of America has renamed itself The Tourette Association of America.  With a new website and a new logo, TAA is looking to bring massive awareness of this disability to America!  As of May 22nd, http://tourette.org will be the new website, replacing http://www.tsa-usa.org/index.html.

In Delaware, the awareness month was honored yesterday by the Delaware 148th General Assembly when both the State House of Representatives and Senate unanimously passed House Concurrent Resolution #36, recognizing the awareness month.  Tomorrow, in Glasgow Park in Newark, DE, there will be a TS Walk in honor of Tourette Syndrome Awareness Month, beginning at 10:00am.

For students with Tourette Syndrome in Delaware, the call for awareness and acceptance has never been greater.  As a father of a child with TS, it can be very tough for our kids.  Acceptance and understanding can be difficult.  For those who happen to see a child ticcing, or maybe even making noises, try to understand these children can not help it.  And drawing attention to tics usually result in greater stress for the child, which only increases the tics.  Children with TS are just like any other kid, they just happen to have something others don’t.