NEW JERSEY - Congressman Leonard Lance (NJ-07) welcomed leading advocates for Tourette Syndrome research to his district office to outline his upcoming legislative initiative to push for more research funding.  The advocates spoke with Lance about the importance of continued educational, medical and training improvements concerning the disease.

Lance told the group he will lead a letter to his colleagues requesting support for $2 million to the Public Health Education and Research Program on Tourette Syndrome.  The letter will be directed to the House Committee on Appropriations for consideration toward the crafting of fiscal year 2016 spending measures.  

Continued funding for these crucial public health programs are needed to ensure progress in understanding and treating Tourette Syndrome.  Education, training and 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.  This program brings hope to the hundreds of thousands of families affected by Tourette Syndrome and I will fight in Congress to protect it.  I thank the work of the advocates who join me in this effort,” said Lance, a member of the Energy and Commerce Health Subcommittee.

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Tourette Syndrome is a part of a spectrum of hereditary, childhood-onset, neurodevelopmental condition referred to as Tic Disorders.  These conditions affect both children and adults, causing them to make sudden, uncontrollable movements and/or sounds called tics.  Tic Disorders can range from mild to severe and, in some cases, can be self-injurious, debilitating and markedly reduce the quality of life.  While some treatments are available for people with Tourette and other Tic Disorders, approaches to care are inconsistent, medications are often ineffective and there is no cure.  Today it is estimated that one in every 100 children in the United States is living with Tourette or other Tic Disorders.  

Faith W. Rice, Executive Director of the New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) and resident of Lebanon Township, has been a champion of the Tourette Syndrome cause.  “NJCTS is proud of the partnership we’ve had with Congressman Leonard Lance for over 12 years. Working with Rutgers University and the State of New Jersey, NJ Center for Tourette Syndrome and Associated Disorders was  launched as the nation’s  first center of excellence for Tourette Syndrome in 2004.  As such we provide services and advocacy for children and families, outreach to the education and medical communities, and support for collaborative research for better treatments and a cure for TS.  Through its core programs NJCTS has reached more than 500,000 families and professionals.”

Lance and the advocates decided on a course of action that will urge cosigners to join Lance’s letter and build progress on Capitol Hill.  Annetta Hewko, Tourette Syndrome Association President, added, “we are indebted to Congressman Leonard Lance who is a true advocate for all those living with Tourette and other Tic Disorders.  His leadership is crucial in garnering the support needed to further our shared mission of raising public awareness and improving care, but the bottom-line is that treatment options for Tourette remain limited and the cause is still unknown.”  The Tourette Syndrome Association works to raise awareness, fund research and provide on-going support to individuals and families. The Association directs a network of 32 Chapters and more than 55 support groups across the country.

Industry praise:

Elridge Proctor MPA, Vice President of Public Policy:

“In recent years we’ve achieved an unprecedented amount of legislative support for Tourette Syndrome, yet we are faced with the challenge of renewing critical funds annually for the Public Health Education and Research Program at the US Center for Disease Control and Prevention (CDC).  As a recipient of TSA’s 2012 Public Policy Award and a strong supporter of families touched by Tourette and rare disorders, Congressman Lance remains an integral partner of our Association and his work underscores the impact federal support has on efforts to educate the public and our government about TS.”

 

Dr. Kevin St.P. McNaught, the national Tourette Syndrome Association’s Vice President for Medical and Scientific Programs:

“The renewed funding will keep essential collaborations like the TSA’s Public Health Education and Research Program at the CDC strong and enable continued innovation for TS and Tic Disorders. We are excited to expand these efforts to increase access to evidence-based treatments and continue critical research through the Association’s partnership with the New Jersey Center of Excellence at the Atlantic Neuroscience Institute at Outlook Medical Center.”

 

Roger Kurlan, MD, Director of the Atlantic Neuroscience Institute component of the TSA Center of Excellence:

“The movement disorders program at the Atlantic Neuroscience Institute (ANI), Overlook Medical Center, Summit, NJ is pleased to be part of this integrated, multi-disciplinary and collaborative center of excellence. The ANI provides expert diagnosis, treatment and research programs for children and adults with TS.”

 

Lance Letter to the House Committee on Appropriations:

 

March __, 2015

Dear Chairman and Ranking Member:

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 Syndrome Association.

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 one in 100 Americans.  The disorder 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 Tourettes 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 FY 2016 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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