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Bayside, New York – May 15, 2007 - Celebrating its 35th year as the only national, voluntary health organization for people with Tourette Syndrome (TS), the Tourette Syndrome Association (TSA) joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month, May 15 to June 15.
“Thirty-five years ago, Tourette Syndrome was an unknown, misdiagnosed and completely misunderstood disorder with only 50 cases reported in the medical literature at that time,” said Judit Ungar, President, TSA. “Since then we’ve seen dramatic changes on many fronts; from increased awareness among the general public to keen interest among the research and medical communities to progress in treatment options and the ability of physicians to rapidly diagnose the disorder. On the legislative front, TSA is proud to have played a major role in protecting children in the classrooms.” The purpose of the annual TS Awareness Month, she added, is to encourage people to seek medical attention for early and proper diagnosis and further public tolerance and understanding for those coping with TS.
Marked by involuntary body twitching and vocal tics, it is estimated that some 200,000 Americans have the disorder, with millions more manifesting associated conditions. National Tourette Syndrome Awareness Month, which was first established by TSA in 1997, provides an opportunity for the TSA, its chapters, and others in the TS community to educate the public about this much misunderstood and misdiagnosed condition.
In 2004, Congress introduced a concurrent resolution (H. Con. Res. 430 and S. Con. Res 113), which “recognizes the importance of early diagnosis, proper treatment and enhanced public awareness of TS and supporting the goals and ideals of a National Tourette Syndrome Awareness Month.”
“Although knowledge among the general public has improved greatly along with media coverage, including recent segments on Oprah and CNN, there is much more to be done,” said Monte Redman, Chairman, TSA Board of Directors. “Sadly many continue to associate having the disorder with the swearing symptom [coprolalia] which actually affects only ten percent of those living with TS.”
In 2004, TSA entered a precedent-setting partnership with the Centers for Disease Control and Prevention (CDC) which provides funding for extensive medical programs across the country to promote accurate and early diagnosis, scientific research and awareness of TS. Medical and allied professionals can obtain CME credits through the TSA website. Thousands of medical providers have participated in this program.
In November 2005, TS achieved national recognition with the documentary production, “I Have Tourette’s but Tourette’s Doesn’t Have Me,” which premiered on HBO and was co-produced with TSA. The program won a coveted Primetime Emmy Award, and brought TS into the homes and schools of millions of viewers.
August 2006 saw a major victory for children with TS when the Individuals with Disabilities Education Act (IDEA) classified TS as Other Health Impaired (OHI), a new categorization which was the result of numerous years of vigorous advocating by TSA for this classification.
Since 1984, TSA has funded nearly $14 million in support of over 200 scientists to conduct research that will ultimately find the cause of and cure for TS. These research efforts will lead to improved medications and improved understanding of the basic causes of this movement disorder.
“TS has baffled many great minds, and it continues to elude easy answers in both treatment and basic science,” said Sue Levi-Pearl, TSA VP of Scientific and Medical Affairs, whose in-laws, Bill and Eleanor Pearl, were among the founders of the Association in 1972. “Life with TS has changed dramatically since the founding of TSA; it has evolved and become a more professional organization that serves many more people than its founders would have imagined possible. TSA is the perfect example of how people can change the world by coming together to make things happen.”
From its inception TSA has pursued a three-pronged mission of education, research and service. The Association coordinates over 31 chapters, two regional offices and more than 125 support groups throughout the country. For more information, call 1-888-4-TOURET or visit http://tsa-usa.org.
Media/Press Inquiries: Contact TSA: 718-224-2999, ext.236; email: tracy.flynn@tsa-usa.org
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999