Appropriations Letter

April 25, 2022

The Honorable Rosa DeLauro
Chairwoman
House Appropriations Subcommittee on
Labor, Health, Human Services, and
Education
United States House of Representatives
2358-B Rayburn House Office Building
Washington, D.C. 20515

The Honorable Tom Cole
Ranking Member
House Appropriations Subcommittee on
Labor, Health, Human Services and
Education
United States House of Representatives
2358-B Rayburn House Office Building
Washington, D.C. 20515

Dear Chairman DeLauro and Ranking Member Cole:
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 $2.5 million in
the Fiscal Year 2023 Labor, Health and Human Services, Education, and Related Agencies
(LHHS) Appropriations bill 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 ethnic 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 and Tic Disorders 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. with Tourette
Syndrome or another Tic Disorder. 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 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 cooccurring 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.
The program has been flat funded at $2 million since Fiscal Year 2015. The additional $500,000
would fund: 1) a systematic literature review to determine prevalence of TS and tic disorders, 2)
a systematic literature review to document the impact and cost of TS and tic disorders, 3) small
grants to pilot innovative approaches at Centers of Excellence (CoE) in 5-7 states to address
priority needs including health equity, transition, and suicide prevention among families affected
by TS and tic disorders through CoEs, and 4) two new Continuing Medical Education (CME)
modules to serve U.S. providers to increase providers’ ability to identify, diagnose and treat tics
and tic disorders.
We respectfully request that you include $2.5 million for the Tourette Syndrome Public Health
Education and Research Program at the Centers for Disease Control and Prevention in the
FY2023 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,

Steve Cohen
Member of Congress

Lee M. Zeldin
Member of Congress

Zoe Lofgren
Member of Congress

Brian K. Fitzpatrick
Member of Congress

Michael F. Q. San Nicolas
Member of Congress

Julia Brownley
Member of Congress

Antonio Delgado
Member of Congress

Lloyd Doggett
Member of Congress

Carolyn B. Maloney
Member of Congress

G. K. Butterfield
Member of Congress

Bobby L. Rush
Member of Congress

John B. Larson
Member of Congress

Peter A. DeFazio
Member of Congress

Joe Wilson
Member of Congress

Anthony Gonzalez
Member of Congress

Raúl M. Grijalva
Member of Congress

Jerry McNerney
Member of Congress

Andrew R. Garbarino
Member of Congress

Mark DeSaulnier
Member of Congress

Maria Elvira Salazar
Member of Congress

Mary Gay Scanlon
Member of Congress

Deborah K. Ross
Member of Congress

Marilyn Strickland
Member of Congress

Madeleine Dean
Member of Congress

Mondaire Jones
Member of Congress

Lizzie Fletcher
Member of Congress

John Yarmuth
Member of Congress

Peter Welch
Member of Congress

Garret Graves
Member of Congress

Bill Foster
Member of Congress

James P. McGovern
Member of Congress

Al Green
Member of Congress

Jake Auchincloss
Member of Congress

Mike Rogers
Member of Congress

Ted Deutch
Member of Congress

Alan Lowenthal
Member of Congress

Sean Casten
Member of Congress

Diana DeGette
Member of Congress

John Katko
Member of Congress

David B. McKinley P.E.
Member of Congress

Eric Swalwell
Member of Congress

Stephen F. Lynch
Member of Congress

Jan Schakowsky
Member of Congress

Salud Carbajal
Member of Congress

Jamie Raskin
Member of Congress

Jason Crow
Member of Congress

Nikema Williams
Member of Congress

Lori Trahan
Member of Congress

Thomas R. Suozzi
Member of Congress

Brian Higgins
Member of Congress

Sharice L. Davids
Member of Congress

Conor Lamb
Member of Congress

Gerald E. Connolly
Member of Congress

Pete Stauber
Member of Congress

Tom Malinowski
Member of Congress

Kathy E. Manning
Member of Congress

Michael Waltz
Member of Congress

Anna G. Eshoo
Member of Congress

Albio Sires
Member of Congress

William R. Keating
Member of Congress

Marc A. Veasey
Member of Congress

J. Luis Correa
Member of Congress

Vicente Gonzalez
Member of Congress

Chellie Pingree
Member of Congress

Dwight Evans
Member of Congress

Glenn Grothman
Member of Congress

Susan Wild
Member of Congress

Kathleen M. Rice
Member of Congress

Rick Larsen
Member of Congress

Joaquin Castro
Member of Congress

Ted W. Lieu
Member of Congress

Danny K. Davis
Member of Congress

Bill Posey
Member of Congress

Chris Pappas
Member of Congress

Jefferson Van Drew
Member of Congress

Christopher H. Smith
Member of Congress

Troy Carter
Member of Congress

Joe Neguse
Member of Congress

Andy Kim
Member of Congress

Pete Sessions
Member of Congress

Nanette Diaz Barragán
Member of Congress

Elissa Slotkin
Member of Congress

Judy Chu
Member of Congress

Jared Golden
Member of Congress

Donald M. Payne, Jr.
Member of Congress

Jerrold Nadler
Member of Congress

Mikie Sherrill
Member of Congress

Mike Thompson
Member of Congress

Kelly Armstrong
Member of Congress

Josh Gottheimer
Member of Congress

Emanuel Cleaver, II
Member of Congress

James A. Himes
Member of Congress

Roger Williams
Member of Congress

Nydia M. Velázquez
Member of Congress

Jackie Speier
Member of Congress

Ami Bera, M.D.
Member of Congress

Colin Z. Allred
Member of Congress

Robert C. "Bobby" Scott
Member of Congress

Marie Newman
Member of Congress

Kim Schrier, M.D.
Member of Congress

Lisa Blunt Rochester
Member of Congress

Neal P. Dunn, M.D.
Member of Congress

Abigail Davis Spanberger
Member of Congress

James Comer
Member of Congress

Donald S. Beyer Jr.
Member of Congress

Earl Blumenauer
Member of Congress

Daniel T. Kildee
Member of Congress

Scott H. Peters
Member of Congress

Elaine G. Luria
Member of Congress

Carolyn Bourdeaux
Member of Congress

Young Kim
Member of Congress

Ilhan Omar
Member of Congress

Brad Sherman
Member of Congress

Angie Craig
Member of Congress