Sending Office: Honorable Steve Cohen
Sent By:
Lauren.Citron@mail.house.gov

Support Funding for Tourette Syndrome

Deadline: March 14, 2018

 

Dear Colleague:

As supporters of the Tourette Syndrome Education and Research Program, established by Congress in the Children’s Health Act of 2000 (P.L. 106-310), we request your support for $2 million to ensure that progress continues to be made in improving the lives
of children and adults affected by Tourette Syndrome (TS) in the United States. 

We ask you to sign on to a letter to the House Appropriations Subcommittee on Labor, Health, and Human Services, Education and Related Agencies in support of continued funding for the Public Health Education and Research Program on Tourette Syndrome.  This
program is administered within the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC), in partnership with the Tourette Association of America.  Continued funding is crucial to ensure progress
in understanding and treating this disease.

The program provides education and training of medical and educational professionals to ensure proper and timely diagnosis and treatment of children with Tourette Syndrome.  It also supports a comprehensive epidemiological study of the disorder.  Education,
training, and general awareness about this disorder will help overcome the social stigma and challenges that children with Tourette Syndrome face each day at school, work, and play and will pave the way for their becoming productive members of our society. 
This program brings hope to the hundreds of thousands of families affected by Tourette Syndrome.

If you have any questions regarding this request or would like to sign the letter, please contact Rob Butora in Congressman Leonard Lance’s Office, at Robert.Butora@mail.house.gov or 5-5361 or Lauren Citron
in Congressman Steve Cohen’s Office at Lauren.Citron@mail.house.gov or 5-3265.

Sincerely,

 

 

____________________________

Leonard Lance

Member of Congress     

__________________________________

Steve Cohen

Member of Congress

 

_______________________________

Peter King

Member of Congress     

 

_____________________________________

Zoe Lofgren

Member of Congress

 

March 19, 2018

  

 

 

The Honorable Tom Cole

Chairman                    

House Appropriations Subcommittee on

Labor, Health, Human Services, and Education

United States House of Representatives B-300 Rayburn House Office Building      

Washington, D.C. 20515                   

 

The Honorable Rosa DeLauro

Ranking Member
House Appropriations Subcommittee on

Labor, Health, Human Services and Education

United States House of Representatives

1001 Longworth House Office Building
Washington, D.C. 20515

 

Dear Chairman Cole and Ranking Member DeLauro:

As members of Congress who are committed to improving the lives of children and adults with Tourette Syndrome in the United States, we respectfully request your support for $2 million for the continued funding of the Tourette Syndrome Public Health Education
and Research Program at the Centers for Disease Control and Prevention, in partnership with the national Tourette Association of America.

Tourette Syndrome (TS) is a hereditary neurodevelopmental disorder that typically develops during childhood and persists into adulthood, making it a life-long condition for most individuals. The disorder affects children and adults in all racial and ethnics
groups.  The symptoms of this disorder are rapid, repeated, and involuntary movements and sounds called tics, which can range from mild to severe and disabling. People with TS often have other conditions, such as Attention Deficit Hyperactivity Disorder (ADHD)
and Obsessive Compulsive Disorder (OCD). Tourette Syndrome is an often misunderstood and stigmatized disorder that impacts as many as 1 in 100 school aged children in the U.S.  Tourette Syndrome can have a profound, negative impact on the quality of life of
those who are affected. The cause of the condition is unknown. There is no cure and treatment options are very limited.

In 2000, Congress passed the Children’s Health Act (P.L. 106-310).  This Act authorized the Tourette Syndrome Public Health, Education, and Research Outreach Program to increase recognition and diagnosis of Tourette Syndrome, decrease stigma attached to
the disorder, and increase the provision of appropriate, effective treatment to those with Tourette Syndrome.

The program continues to successfully educate and train physicians, allied healthcare workers, and education professionals to ensure proper and timely diagnosis and treatment of children with Tourette Syndrome.  The comprehensive epidemiological study of
the disorder, also supported by this program, will be critical for understanding and treating this disease.  This study will seek to determine the prevalence of the disorder in the general population and the frequency of co-occurring disorders such as Attention
Deficit Hyperactivity Disorder and Obsessive-Compulsive Disorder.  The knowledge gained from this research will greatly improve the lives of children and adults with Tourette Syndrome.  We respectfully request that you include $2 million for the Tourette Syndrome
Public Health Education and Research Program at the Centers for Disease Control and Prevention in the FY2019 Labor HHS Appropriations bill.

We thank you and commend you for your leadership in ensuring an ongoing federal commitment to the improvement of health and the expansion of research, treatment, education, and prevention of diseases and disorders.                                      

Sincerely,

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