SEE OUR VISION. FEEL OUR IMPACT.
Making life better for all people affected by Tourette Syndrome and Tic Disorders. tourette.org
The Tourette Association of America is dedicated to MAKING LIFE BETTER for all people affected by Tourette and Tic Disorders. We do this through efforts that RAISE AWARENESS, advance RESEARCH and SCIENTIFIC understanding; and provide SUPPORT and treatment options.
The onset of Tourette Syndrome (TS) is often subtle, but it’s impact can be striking. Symptoms typically appear in early childhood and can seem as benign as excessive blinking, sniffling, or chronic throat clearing. Tapping, banging, kicking, shrieking, screaming, or repeating words might follow. For parents, teachers, and peers, the cause of these behaviors, movements, and sounds can be both troubling and difficult to identify. Is it poor eyesight? Allergies? Aggression? Acting out? Or is it Tourette Syndrome? Tourette Syndrome is a neurodevelopmental disorder that affects children, adolescents, and adults of all races, ethnicities and both sexes. The condition is characterized by sudden, repetitive, involuntary movements and sounds called tics that can range from mild, to severe, to debilitating. And because Tourette Syndrome and other Tic Disorders present uniquely across individuals, the journey to an accurate diagnosis can be arduous, frustrating, and lengthy. Even with the clarity of a diagnosis, the path to getting effective treatment isn’t always direct. Medications and other therapies vary in effectiveness from person to person, and access to medical providers who are skilled in treating Tourette Syndrome can be limited. Moreover, many people affected by these conditions face intense social stigma that can cause social and emotional isolation. While there is no known cure for Tourette Syndrome (TS), there is both hope and help thanks to the Tourette Association of America (TAA). Since 1972*, the TAA has pursued a vision of creating a better world for all people affected by Tourette and Tic Disorders: a world where there is greater understanding and more treatment options; a world with less bias and more compassion; a world where people with this spectrum of neurological conditions can find support from peers, educators, civil servants, and government leaders. The Tourette Association of America has made great strides toward making these goals a reality. We invite you to explore our vision and feel our impact.
* The Tourette Association was formerly known as the Tourette Syndrome Association.
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AWARENESS
We live in a world that regularly attributes misspoken sentiments, errant behavior, and poorly-delivered speeches to “Tourette Syndrome.” Even well-meaning people—teachers, adults, law enforcement officials, co-workers—lack a basic understanding of Tourette Syndrome, which can result in discrimination, bullying, unwarranted punishments, low self-esteem, and social isolation. Taken together, cavalier references to TS and general misunderstanding perpetuate stigma, spread misinformation, and cause pain. That’s why raising awareness, sharing the facts, and working to foster social acceptance through education is integral to our mission. Our work in this area features: • Public Health & Education programs across the country and online that address topics of interest related to TS and co-occurring conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), and anxiety. These programs are offered at no cost thanks to a grant from the Centers for Disease Control and Prevention (CDC). • Developing and cultivating a legion of Youth Ambassadors who educate peers, adults, educators, and government officials about these disorders. • Bold social media and video storytelling campaigns that advance understanding, elicit compassion, and foster acceptance. • Presence in national, regional and local media to raise awareness about TS. • Extensive resources to inform and support individuals affected by TS or tics, as well as doctors, researchers, educators, the media, and civic leaders. Resources are offered through our website, brochures, workshops, and Information & Referral staff. • Proactive lobbying on Capitol Hill by our Public Policy Department and constituents.
IMPACT by the Numbers $10 Million Investment in the TAA by the CDC/federal government since 2005 to carry out public health and education efforts
5 NUMBER OF LANGUAGES THAT TAA MATERIAL IS AVAILABLE
10.2 Million OVER SIX-MONTH PERIOD People reached through a social media campaign to challenge the world to learn more and stop the stigma.
125,000 Number of people across the United States who have asked to receive information and resources from the Tourette Association of America
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13-year-old ETHAN BOYCE from Simi Valley, California, is passionate about raising awareness for Tourette. When he was ten years old, Ethan was diagnosed with Tourette Syndrome after experiencing multiple facial tics. He was bullied and misunderstood throughout elementary and middle school for his tics by both students and teachers. He has since made it his mission to put a stop to the stigma and raise awareness for what Tourette really is. Toward this goal, Ethan was selected to receive training to become an official Tourette Association of America (TAA) Youth Ambassador. So far, he’s met with legislators on Capitol Hill to request more funding to study this disorder and has conducted “Awareness Presentations” for more than 500 people at multiple schools in Simi Valley. Ethan’s passion and awareness efforts go far beyond the classroom. Every year, he and his family participate in a “Team Tourette” event to raise awareness and funding through walks and runs. He and his family have raised thousands of dollars toward this effort!
109K
350 NUMBER OF VIDEO VIGNETTES on our website and our Tourette TV YouTube channel that offer peer-to-peer, professional and informational perspectives on living with Tourette Syndrome.
AVERAGE MONTHLY PAGE VIEWS on tourette.org helping people find information, support, and doctors. 3
RESEARCH
As with any task in life, there is no progress without hard work. The Research and Medical Department is the engine of the TAA that drives the advancement of TS knowledge by funding groundbreaking research, developing novel treatments, and helping to train the next generation of top-level scientists and doctors who will work to make life better for people with TS. For over 40 years, the Tourette Association of America has been at the forefront of scientific discovery, research, and treatment advances that serve the Tourette and Tic Disorder community. We have: • Catalyzed the development of innovative treatments, including Comprehensive Behavioral Intervention for Tics (CBIT), which is a non-medication and revolutionary treatment option. • Successfully identified both promising researchers and studies to advance the understanding and treatment of Tourette and Tic Disorders. • Modeled coordinated and advanced care through our Centers of Excellence program at the nation’s most prestigious health care and university systems. • Developed a robust Tourette Health and Education Program that provides free professional and family education opportunities (in-person and online) and produces evidence-based resources that address the various aspects of managing and living with a Tourette diagnosis. • Expanded the universe of trained medical professionals around the country in state-of-the-art treatment and care for Tourette Syndrome and Tic Disorders through TAA-run training institutes. • Established numerous national and international groups and Boards of experts who work together on shared goals to better treat and understand Tourette Syndrome. • Convened the largest gathering of experts in the history of TS by holding the 1st World Congress on Tourette Syndrome.
IMPACT by the Numbers
252 number of medical
professionals that the TAA has trained across 15 cities in the United States and Canada in CBIT
$21 Million
The amount the TAA has invested in 250 scientists since 1984 to develop new understanding of and treatment for Tourette Syndrome
60% of TAA funded studies and researchers have gone on to receive major funding from federal sources
430 MEDICAL PROFESSIONALS
representing 38 COUNTRIES convened at Tourette Association– led 1ST WORLD CONGRESS on Tourette Syndrome.
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Spotlight On HEATHER SIMPSON, MOT, OTR/L University of Florida, Center for Movement Disorders and Neurorestoration Tourette Association of America Southeast Regional Center of Excellence
Finding a specialist who can offer comprehensive care to those families affected by Tourette Syndrome can be hard. In addition, the stress and urgency of the waxing and waning nature of the disorder can lead to an overwhelming need for immediate care. The creation of the Center of Excellence Program through the Tourette Association of America has allowed an increased recognition and support of unique, integrated, and multi-disciplinary care for Tourette Syndrome and Tic Disorders across the country. This works to best serve the needs of families in many ways. For example, in the TAA Southeast Center of Excellence, we serve many rural communities in which obtaining a diagnosis or services are limited, and many times under par. However, with the designation as a Center of Excellence, we have been able to establish a broader reach of care. In addition, coordination of services across the many centers allows more than one specialized physician (neurology, psychiatry, psychology) to serve patients across several health care systems, which increases the scope of diagnosis, research, and treatment. Families often tell me that it helps just knowing that they have a team supporting them through the process of TS diagnosis and treatment. The Centers of Excellence are just that: a dedicated team that coordinates the very best care to treat not just the symptoms,
TOURETTE ASSOCIATION OF AMERICA CENTERS OF EXCELLENCE LOCATIONS BAYLOR COLLEGE OF MEDICINE Houston, TX CHILDREN’S MERCY HOSPITAL Kansas City, MO JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE Baltimore, MD MASSACHUSETTS GENERAL HOSPITAL Boston, MA UNIVERSITY OF UTAH Salt Lake City, UT YALE CHILD STUDY CENTER New Haven, CT NEW YORK STATE CONSORTIUM Weill Cornell Medical College New York, NY Northwell Health Manhasset, NY University of Rochester Medical Center Rochester, NY Icahn School of Medicine at Mount Sinai New York, NY UNIVERSITY OF CALIFORNIA, LOS ANGELES Los Angeles, CA
but the patient and family too!
SOUTHEAST REGIONAL CENTER Emory University School of Medicine Atlanta, GA
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University of Alabama at Birmingham Birmingham, AL University of Florida Gainesville, FL
number of TAA Centers of Excellence, which are located in the nation’s most prestigious health care and university systems.
University of South Carolina Columbia, SC University of South Florida St. Petersburg, FL
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A letter from the desk of:
Douglas W. Woods, Ph.D. Vice Provost for Graduate and Professional Education and Dean of the Graduate School Professor of Psychology Marquette University Back in 2001, the Tourette Association was receiving encouragement from its members to find nonpharmacological treatment options. With the urging of some TAA members and a very forward-thinking leadership, the TAA created the Behavioral Sciences Consortium and gave a group of clinicians, scientists and other experts the task of developing and testing behavioral treatments for TS. The TAA funded a number of phone calls and meetings that allowed these researchers to develop Comprehensive Behavioral Intervention for Tics (CBIT), along with a plan to test the treatment. Funding of these early studies and support for designing CBIT cost a little over $300,000 and a number of years, but the results have paid off exponentially. First, stemming directly from the TAA’s encouragement, support, and advocacy in helping to develop CBIT, more than $8 million dollars and counting in NIMH-funded research for TS has been applied for and won by researchers. This is money and research that would not otherwise have gone to Tourette research. Second, because of the TAA’s efforts in CBIT, many more researchers in many more fields are now studying CBIT and Tourette Syndrome. These professors in various disciplines are teaching their students about Tourette Syndrome, creating health care providers who are even more knowledgeable about Tourette Syndrome. Finally, and most importantly, the TAA’s support of CBIT has helped create another effective treatment option for persons with TS. The TAA has continued its support and advocacy by working to make the treatment available to those who may benefit. Through the TAA Behavior Therapy Institute, the organization has trained hundreds of licensed psychologists, counselors, OTs, nurses, psychiatrists, behavior analysts, etc., in CBIT. Through its partnership with the CDC, the TAA has informed thousands more health care providers about the treatment, and has been developing training and support materials for the website in order to encourage providers to learn more about CBIT. Members of the TAA, parents of children with TS and adults with TS, encouraged the organization to advocate successfully on their behalf. They asked the organization to give them effective treatment options, and the TAA delivered. CBIT is now one of the recommended first-line treatments for TS in Europe, Canada, and the United States. The TAA CBIT manual has been translated into multiple languages and health care providers are learning to do CBIT all over the world. TAA did its part. Patients with TS and their parents must remember that these advances in treatment happen when the parents and patients work with and support Tourette Association of America.
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CBIT CLOSEUP Meet Trevor Harris Youth Ambassador, Age 12 from Virginia
What kinds of tics or symptoms led you to seek treatment? I had painful head and body ticcing, and was diagnosed with Tourette Syndrome at age 6.
What kind of treatment did you try? I tried medication, and at first, it worked like a magic pill. However, as my tics evolved, the medicine stopped working. Then my anxiety and ADHD symptoms got stronger than the tics, and I couldn’t take medicine for all my symptoms. That’s when CBIT was introduced to me; that was four years ago.
What is it like to go through CBIT? Learning and practicing CBIT takes lots of patience and practice. Most times I just want to give up because it’s just like homework; you have to keep working at it. And I do.
How did CBIT make a difference for you? Are the results lasting? Overall, I have fewer headaches because CBIT has helped me manage my tics well. Though, I do need refreshers periodically.
What would you tell others who are thinking about trying CBIT? Try CBIT! CBIT is hard work but so is living with Tourette. When I want to give up, my family reminds me that I am in control and I manage my tics through CBIT.
What role did the Tourette Association play in helping you manage Tourette? Becoming a TAA Youth Ambassador taught me that I am a voice for awareness and I, too, can do anything I set my mind too. When I grow up I want to show people that no matter what your differences are, you still can do anything. My Tourette doesn’t define me. I am just a normal kid who happens to have TS.
CBIT represents one of the most important advancements in treatment in the last
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SUPPORT
Much of the stress associated with a diagnosis of Tourette Syndrome or another Tic Disorder is related to the uncertainty of what the diagnosis means, how it impacts families, the social implications, the treatment options, and the impact of TS on daily life. These stressors, often accompanied by fear and misunderstanding, can make the symptoms of Tourette and tics even worse. That’s why the Tourette Association of America has always placed tremendous emphasis on providing support for all people affected by these neurological conditions. • Through our network of 32 Chapters and 81 support groups across the country, the TAA provides emotional support and information in group settings, which provides opportunities to develop friendships and connections. • The TAA coordinates state-of-the-art and seamless care through its Centers of Excellence program, which operates out of the nation’s most prestigious universities and health care systems. • We gather children, families, educators, and medical experts at our bi-annual National Advocacy and Education Conference to learn and exchange the latest information about living with TS. The National Conference also offers a unique social experience where people with TS can connect with others in similar circumstances and forge lasting bonds. • We help parents navigate the maze of Education Rights & Accommodations through Education Consulting. • Peer-to-peer education is offered through the TAA Youth Ambassador program. • Physician and service provider referrals are offered at tourette.org and by phone. • In-depth information on research and medical advances are offered through newsletters, web content, blog platforms, video vignettes, and publications. • TAA offers “Ask the Expert” and call-in support services.
IMPACT by the Numbers
32 CHAPTERS 81 SUPPORT GROUPS ACROSS 26 STATES
1 in12 calls that the TAA responds to are from parents calling about extremely urgent and serious issues. These include schools attempting to
2000 number of IEPs and 504 plans that TAA has assisted in developing for children around the country since 2003
suspend a student for months; removal of students from general education; expulsion of students; or isolation of students.
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Spotlight On JANA AND MATTHEW GOODWIN I first reached out to the Tourette Association shortly after moving and had to place my children into a new school district. I made sure I told the teachers and Special Education Director that my son Matthew had a diagnosis of Tourette Syndrome. To help ease the transition, I gave the teachers some resources from the TAA website to better help them to understand his diagnosis. However, since Matthew’s tics were not similar to ones that are more common, they questioned his diagnosis and blamed his difficulties on bad behavior. They used punishment and restraints — even to the point of leaving marks on him. I tried tirelessly to explain that the many different symptoms and behaviors associated with TS and co-occuring conditions, but I needed more support. That’s when I called the Tourette Association. The first person I spoke to at the TAA listened to my story and mailed me some videos and articles. I shared these with the school but they still did not have a true understanding of my son’s symptoms and continued to restrain and remove him from the classroom. I was then put in touch with the TAA’s Education Specialist. We had a lengthy conversation and it was such a relief to finally speak to people who really understood my son’s symptoms. I gave the school a flyer that provided different options for
Matthew and Jana Goodwin, (middle, right) share a photo with Matthew Giorgano (left) an adult with TS and a professional drummer.
the school to be educated on TS. To my surprise and relief, the school contacted the TAA the following day and scheduled a time when my son’s team could be on a conference call with the Education Specialist. I was shocked, but very happy, that they immediately stopped using punishment and restraints. They began to give him the support he needed and my son’s behaviors at school and home calmed down. During this time, I found out about the TAA National Education and Advocacy Conference and felt like my son and I could benefit from it. I really wanted to attend the
“... it was such a relief to finally speak to people who really understood my son’s symptoms.”
conference and was able to when the TAA provided me with a scholarship. I drove with my son and my mother for two days across the country, all the way from Texas, to go. I’m so glad we made the trip! We learned so much and my son got to meet so many other kids with Tourette. He finally felt like he could fit in. I also met other parents, attended many workshops, and learned a great deal. It was a wonderful feeling to know I’m not alone in this; that I have someone there for me while Matthew is having his struggles. I will never be able to express the thankfulness for finding the Tourette Association.
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TOURETTE ASSOCIATION OF AMERICA NATIONAL BOARD OF DIRECTORS
LEADERSHIP TEAM
Rovena Schirling, Chair
John Miller
Monte Redman, First Vice Chair
President & CEO
Marcie Kirkpatrick, Second Vice Chair Alice Kane, Third Vice Chair
Kevin St. P. McNaught, Ph.D. EVP Medical & Research Programs
Cindy Kurtz, Fourth Vice Chair Reid Ashinoff
Jennifer Davis
Stephen Barron
VP Chapter & Support Services
Fred Cook, Finance Committee Chair
Diana Felner
Paul S. Devore
VP Public Policy
David Koch
Julie Noulas
Jeffrey Kramer
VP Finance & Administration
Nancy Kramer Kenneth D. Moelis
Amanda Talty
Bruce D. Ochsman
VP Development
Chris Ovitz
Saskia Monteiro Thomson
Robin Small
VP Marketing & Communications
Randi Zemsky
ABOUT THE TOURETTE ASSOCIATION OF AMERICA Founded in 1972, the Tourette Association of America is dedicated to making life better for all individuals affected by Tourette and Tic Disorders. The premier nationwide organization serving the TS community, the Association works to raise awareness, advance research, and provide ongoing support through a nationwide network of Centers of Excellence, 32 local Chapters and 81 support groups. As a testament to our standing as the leader in the field of Tourette and Tic Disorders, the Tourette Association has a long-standing partnership with the Centers for Disease Control and Prevention to provide outreach, training, and education. This publication was supported by the Cooperative Agreement Number, 1 NU38DD005375-01-00, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
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