Massachusetts Chapter

Tourette Association of America - MA Chapter
Attn: Barbara Fink
P.O. Box 254
Shrewsbury, MA 01545
DONATE TO YOUR LOCAL CHAPTER

Details

The Tourette Association of America – Massachusetts Chapter is a volunteer led, nonprofit organization supporting the needs of individuals and families affected by Tourette Syndrome and Tic Disorders. We are committed to raising public awareness and fostering social acceptance; advancing scientific understanding, treatment options and care; educating professionals to better serve the needs of children, adults and families challenged by Tourette and Tic Disorders; advocating for public policies and services that promote positive school, work and social environments; providing help, hope and a supportive community across the nation; and empowering our community to deal with the complexities of this spectrum of disorders.

 




Events

Stay Up To Date!

Click here to stay up to date and in touch with the Massachusetts chapter!

Aubuchon Hardware Fundraiser

3rd Annual Tourette’s Awareness Raffle

Aubuchon Hardware Fundraiser

 

Folks, thank you for being a part of the Tourette Association of America, Massachusetts Chapter. Our organization is volunteer-run and donation-driven. We rely on your support in order to fund programs such as sponsoring the MA Tourette Youth Ambassador. For the third year, Aubuchon Hardware has taken the lead and is hosting the 3rd Annual Tourette Awareness Raffle.

If you wish to support our organization, please consider purchasing some raffle tickets. Tom has gathered some fantastic raffle prizes, and many would make excellent gifts for Christmas or Hanukkah, or just for fun. 

Amazon Smile

Amazon Smile – Please consider supporting our chapter by shopping at AmazonSmile (search for Tourette Syndrome Association – MA Chapter). When you shop at AmazonSmile, Amazon will donate to the Tourette Association of America – MA Chapter. You can support us every time you shop.

Services

Get Involved!

Tourette Association of America – MA Chapter on AmazonSmile
Amazon Smile
– Please consider supporting our chapter by shopping at AmazonSmile (search for Tourette Syndrome Association – MA Chapter). When you shop at AmazonSmile, Amazon will donate to the Tourette Association of America – MA Chapter. You can support us every time you shop. The physical address location is in Massachusetts.

Tourette Association of America – MA Chapter Looking For Volunteers
* Are you willing to start a support group in your area? We are especially looking for help in Western, MA.
* Do you have telephone and email skills and would like to help with our MA Referral line and answering questions via phone and email?
* Would you like to help plan an event?
* Are you willing to help out on a committee?
* Would you like to help in getting a newsletter started for our chapter?
If so, please email us at info@tsa-ma.org at Tourette Association of America – MA Chapter if you are interested.

Massachusetts General Hospital Research Study
Where: Online
When: Going on now
MGH Online Research Study
For more information or to sign up for the Genetics of Tourette Syndrome Online Research, please go to Genetics of Tourette Syndrome Website

Guanfacine for Children with Tic Disorders: A Multi-Site Study
Where: Yale Child Study Center
When: Going on now
The Yale Child Study Center is recruiting subjects for a study of a new extended-release form of guanfacine (Intuniv®) in the treatment of tics in children with a Chronic Tic Disorder.

For more information, please see the Yale Child Study Center flier for more details.

Join us on Facebook

Tourette Association of America – MA Chapter Support
It is a closed group so if you would like to join please request membership and please include a comment of your experience or connection with TS.

Tourette Association of America – MA Chapter Fan Page

Tourette Association of America - MA Chapter Board Members

Officers:

Mike Robinson, Chapter Chair
Mike Robinson lives in Mansfield, MA with his wife Julie and three children, two of whom have recently been diagnosed with Tourette Syndrome. Mike has learned important tips in working with educators in support of his children with Tourettes, partnering with educators to develop tools to effectively support his children in the school environment.

A software consultant, Mike has recent experience identifying and leveraging helpful regulations which can sometimes be a necessary last resort in supporting Tourette children in school. He has worked with regular public, Charter and therapeutic school programs as his children’s needs have required. He also volunteers as a CCD teacher at his local parish.

Mike can can be contacted via email at mrobinson.taama@gmail.com

Barbara Fink, Chapter Chair
Barbara graduated from the College of William and Mary in Virginia with a BS in Biology. After working in research, she became a stay-at-home Mom to raise her three children. Zack, her youngest, was officially diagnosed with Tourette, OCD and ADHD at the age of 8. As a family, they embraced his differences, learned all they could and then educated others. Zack became a Youth Ambassador, while Barb and her husband became active in the Tourette Association of MA.

Barb now works at Shrewsbury High School as a Special Education paraprofessional. Having to become familiar with special education and its parameters on a personal level, she enjoys giving back and helping other students work to their full potential. She also teaches math at the Shrewsbury branch of Russian School of Math. She enjoys spending time with her family and devoting time to care for and play with her beloved dogs.

Barbara can can be contacted via email at bfink.taama@gmail.com

Kelley Seay, Treasurer
Kelley Seay is a staff accountant in the pharmaceutical industry. Prior to her current work, she worked as a staff accountant in other sectors including banking. She is a graduate of the Isenberg School of Management at the UMass Amherst with a BBA in Accounting. Separate from her career in accounting, she also purses her passion of cooking, which includes a recent degree from Johnson and Wales University in Culinary Arts. Along with pursing career goals in accounting, she hopes to one day open her own restaurant. While Kelley is not directly impacted by Tourette, she is of a volunteer mindset, and our chapter is thrilled to have her enthusiasm and talent on the board.

Kelley can be contacted via email at kaseay.taama@gmail.com

Stevany Matthews, Secretary
Stevany is an ESL teacher in grades 3-5 at Woodland Elementary School in Milford, MA. She has been an educator for over 15 years, teaching a wide variety of students from various socio-economic, cultural and linguistic backgrounds. She has a Master’s degree in Applied Linguistics from UMass Boston. She is also fluent in Spanish.

Stevany’s best experience in education has come from working with her own children, ages 11 and 8. Her 11-year-old son was diagnosed with Tourettes in 2013 after a roller coaster ride of diagnoses and doctors. Through reading much of the information made available by the Tourette Association of America, she is amazed at how little she knew about Tourettes and how well the diagnosis fit her son. She and her husband Hank would like this opportunity to help other families who are on a similar journey.

Stevany can be contacted via email at smatthews.taama@gmail.com.

Directors:

Steve Alexander, Youth Ambassador Coordinator
Steven Alexander is a board member for the Tourette Association of America – MA Chapter. He helps with organizing the chapter, running meetings, developing workshops, and other chapter initiatives.

In addition to work with the Tourette Association of America – MA Chapter, he is a member of the Tourette Association of America’s Chapter Council, is a Council Member at the Institute on Disability, and has served on various special needs action and policy groups. Realizing that those with special needs benefit from better understanding at the state and federal level, he speaks with state and federal Senate and House members on relevant issues.

Steve regularly participates in professional development trainings with education, Tourette, and special needs organizations. He is a certified K-8 educator and has taught in public and private schools. Steven is the recipient of an Outstanding Teaching Award and was recognized by the New Hampshire Department of Education and the Parent Information Center for “outstanding contributions in promoting family-school partnerships”. His university schooling focused on education and psychology; he holds a Bachelor of Science from Michigan State University and a Master of Science from Texas A&M University. Having a family member with Tourette, Steve has lived the experience firsthand and has confidence in the effectiveness of appropriate supports over the long term.

On March 22, 2014, In Washington DC, the Tourette Association of America presented Steve with the Viktoria Holm Kramer Volunteer Recognition Award. The Viktoria Holm Kramer Volunteer Recognition Award recognizes the recipient, “For displaying the highest standards of commitment, excellence of service and unselfish compassion toward the Tourette Syndrome Community.” Steve has been a huge asset to our MA Chapter. He has worked tirelessly to breathe new life into our board, member base, and chapter initiatives. In addition to working with the local Tourette Syndrome community and our state chapter, he has put energies into assisting the Tourette Association of America.

Steve can be contacted via email at salexander.taama@gmail.com

Christine Joyal, Board Member
Christine is the mother of four children. She graduated from Katharine Gibbs Business School in Boston with an Associate Degree in Secretarial Arts Business Technology.

Her oldest son has Tourette and several co-morbid conditions. She also has children with ADHD, OCD, and Sensory Processing Disorders, and a son with PDD-NOS. Growing up she watched her brother and sister dealing with tics, both motor and vocal. She never knew what it was and just thought it was quirky behavior, until her oldest son showed tics at a very young age. She homeschools all four of her children while volunteering for her local church and the Tourette Association of America – MA Chapter. She enjoys doing crafting in her spare time, and has created three quilts for fundraising for Tourette.

She joined the board of directors for Tourette Association of America – MA Chapter in 2006 as Secretary. Christine has lobbied Capitol Hill in Washington, DC as well as in Massachusetts to help spread Awareness about Tourettes and Tourettes issues. She has done school personnel presentations for parents of children with Tourettes. Christine lives in Taunton with her husband, three sons, daughter, loveable cats, and snuggly dog.

Christine maintains the Tourette Association of America – MA Chapter website and is the Support Group Coordinator for the MA Chapter.
Christine can be contacted via email at cjoyal.taama@gmail.com.

Linda M. Isbell, Board Member
Linda is a social psychology professor at the University of Massachusetts, Amherst, where she has worked since 1999. Her brother was diagnosed with severe Tourette Syndrome in the 1970s and, as a result, she has decades of personal experience with the disorder. She also has two sons, one of whom was diagnosed with TS, ADHD, OCD, and mood instability at the age of 3. Linda’s family has been members of the Tourette Association of America since the late 1970s and she is happy to be involved in helping families navigate the challenges that often come with these disorders.

Professionally, Linda is a research scientist and educator who has published many articles in professional journals and books related to her research on the relationship between feeling and thinking. Her work has also been supported by federal research grants. She is currently writing a book describing her family’s four decade journey with Tourettes and the frequently co-occurring conditions while also capturing historical changes in research and knowledge about these disorders. Linda has presented research about Tourettes along with her family story to students, doctors, and clinicians at medical schools and universities.

Linda can be contacted via email at lisbell.taama@gmail.com

Steve Fink, Board Member
Steve is the Director of Business Planning for Harvard Pilgrim Health Care, a leading non-profit health benefits company based in New England focused on improving the value and quality of health care for the people and communities it serves. He holds a Master’s Degree in Management form the M.I.T. Sloan School and a Bachelor’s Degree in Economics from Brandeis University.

Steve is a married father of 3 children whose youngest son was diagnosed with Tourettes, OCD, and ADHD at age 8. In 2011 Steve traveled to Washington D.C. with his son who was trained as a Tourette Association of America Youth Ambassador. While there Steve and his son met with members of Congress and the Senate to foster awareness and provide first hand experience of life with Tourettes. Since then Steve and his son have participated in educator workshops and informational presentations at schools. Steve lives in Shrewsbury with his wife who is a special needs aide in the Shrewsbury public school system and their family which includes a Saint Bernard, English Mastiff, Newfoundland, and one cat.

Steve can be contacted via email at sfink.taama@gmail.com

Ericka Benson, Board Member
Ericka Benson is a PhD biologist who currently works as a Program Manager in the biotech industry. In this role, she loves to dig in to learn all that she can about a given challenge, and develop action plans and build team engagement to reach resolution. Her youngest son was diagnosed with Tourettes + ADHD in 1st grade (2013), and her family quickly became well versed in navigating the medical, home, and school challenges presented by these comorbid conditions. True to her style, she and her family immersed themselves in the many supportive materials and educational opportunities that the Tourette Association of America has made available and engaged her son’s educational team with the appropriate supports needed to enable his success. She has been particularly grateful for the local Tourette Association of America – MA Chapter contacts and events that have made all of this possible, and she is passionate about paying this forward by helping other Tourettes families become connected and supported. Ericka lives in Lexington with her husband and two sons.

Ericka can be contacted via email at ebenson.taama@gmail.com

Josh Del Viscovo
Josh is a Special Education Teacher with a variety of school experiences. He has had persons with Tourettes on his caseloads, in his classrooms, and has consulted to many classroom teachers to come up with strategies to effectively support Tourettes in the classroom setting. He has experience with IEP/504 development and implementation of accommodations for all students with Learning Disabilities, but also those with Tourettes. He regularly attends conferences and events, workshops, and trainings to further his knowledge and skills in supporting students with a variety of needs. He currently works as a classroom teacher at a Private Special Education School, where he works with students with a variety of Behavioral, Psychiatric, and Neuropsychological Disorders.

In addition to his work experience Josh has done extensive personal research in the current trends of Tourettes and the treatments and interventions being used. He brings a unique perspective to the table in that he himself is a person with Tourettes and the co-occurring conditions that are prevalent in people with Tourettes. He has experienced treatment from CBT, HRT, CBIT, and even pharmacological interventions. He understands the frustration first hand of those struggling in school, in the work place and socially. He frequently shares his experiences of being in college, being in graduate school, and his struggles to keep professional positions all caused by the Tourettes and co-occurring conditions.

Josh holds a Bachelors Degree in Special Education from Curry College, a Masters Degree in Leadership and Team Development focusing on developing leadership in students with Emotional Impairments, and is working on a very unique field. He is currently working with Esoteric Theological Seminary, in Gainsville FL, to earn his Doctor of Ministry degree in Interfaith Spiritual Guidance, where he is focusing his studies on how Mindfulness focus and Mindfulness Techniques based in the roots of Buddha and its positive effects on Tic reduction.

Josh can be contacted via email at jdelviscovo.taama@gmail.com

Youth Ambassador Program

The TAA Youth Ambassador Program brings together, trains and supports teens to advocate for and talk about Tourette and Tic Disorders in their community, with their elected officials and before their peers at school, sports leagues, scout troops, camps and after-school programs. Learn More

Looking for a Youth Ambassador Presenter?

Are you a school or community organization? If so, you can schedule a Youth Ambassador by emailing salexander.taama@gmail.com.

Recently Trained Youth Ambassadors for Tourette Association of America – MA Chapter:

2016
Brendan Robinson
Camden Alexander
Nate Swirnoff

Current Youth Ambassadors for Tourette Association of America – MA Chapter:

2014
Abby Najarian

2011
Zachary Fink

Education In-Service

The TAA conducts in-service presentations around the state with various schools on an as needed basis. It can make a tremendous difference in your child’s academic experience to have the school staff educated about the many facets of TS. Learn More

Tourette In the News

Lexington eigth-grader named an ambassador for Tourette Syndrome Awareness
Nathan Swirnoff
Wicked Local – Lexington
April 15 2016

 

Lexington’s Nathan Swirnoff Represents Tourette Association as Youth Ambassador in Washington
Nathan Swirnoff
Lexington Colonial Times Magazine
April 2016

 

Tourette’s Association Selects Marblehead Student as Youth Ambassador
Camden Alexander
Wicked Local – Marblehead
March 3, 2016

 

Mansfield Middle School Student Living with Tourette’s Syndrome Taking Message to Congress
Brendan Robinson
The Sun Chronicle
February 29, 2016

 

At 13, he’s at ease spreading understanding of Tourette’s
Zachary Fink
The Boston Globe
May 15, 2011

 

Teen With Tourette’s Serving As Town Meeting Member
Michael D’Ortenzio
TheBostonChannel.com
April 6, 2010

 

Ashland teen becomes ambassador for Tourette syndrome
Tim Johnson
Metrowest Daily News
April 23, 2009

 

Mansfield teen trained as Tourette syndrome Youth Ambassador
Jackie Staffier
Mansfield News/Wicked Local
April 2, 2009

 

Frank Tortorici – 30-year old personal trainer, holistic coach, actor, model, rapper and health food entrepreneur.
Inside TSA
Spring 2009

 

Scituate teen is a Tourette Syndrome Association Youth Ambassador
Alex Parenteau
The Patriot Ledger
March 21, 2009

 

Are you “ticcing” more than your clock?
The Challenges of Tourette Syndrome
Teen Voices
March 2009

 

Tourette’s not all that funny
Worcester Telegram & Gazette
June 1, 2007

 

‘Tourette’s Doesn’t Have Me’
Erickson Family
Old Colony Memorial
November 16, 2005

 

Show on Tourette’s features Sharon boy
Jacob Rader & HBO Documentary
The Patriot Ledger
November 12-13, 2005

 

A Newsletter By and For Kids with TS
Michael D’Ortenzio Jr. Jacob Rader
That Darn Tic
Published by National TSA
Fall 2005

 

Understanding Tourette
Jack Hanke
The Eagle-Tribune
August 29, 2005

 

Educational Resources from the MA Chapter

Advocacy

Associated Advocacy Center – Visions for the Future, Inc.
Advocates that provide knowledgeable representation at team meetings, mediations, and court; for special education, discipline, expulsion hearings and juvenile court proceedings. Their goal is to educate and empower parents. This will combat the disparaging education and treatment that children face. Their programs foster parent and student independence and community resource connections.

 

Grants for advocate training and other areas on the commonwealth of MA site
www.mass.gov/mddc/grants/current.htm
www.mass.gov/mddc/cefp/index.htm

 

(MAC) Massachusetts Advocates for Children
MAC’s goal is to ensure that children with disabilities receive the services and accommodations necessary to participate in the mainstream of public education and receive equal educational opportunities.

 

Parent/Professional Advocacy League (PAL)
(617) 542-7860
PAL is the Massachusetts chapter of the Federation of Families for Children’s Mental Health. PAL works with more than 4,000 families and professionals, and provides support, education, referrals, and advocacy on behalf of children with mental, emotional, or behavioral special needs.

 

Federations & Networks

FAMILY TIES of Massachusetts
A Project of the Federation for Children with Special Needs
Statewide Parent-to-Parent Network Providing Information and Support to Families and Professionals Helping Children with Special Needs

 

The Federation for Children with Special Needs
The Federation for Children with Special Needs is a center for parents and parent organizations to work together on behalf of children with special needs and their families. The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.

 

The George Lucas Educational Foundation site
Great resource for families and educators.

 

LD On Line
LD On Line has gathered together an extensive collection of resources on learning disabilities and ADHD for parents and educators.

 

Parent Information Network
47 E. Grove St.
Middleboro, MA 02346-1816
(508) 947-8779
Contact: Barbara Macias bmacias@bamsi.org
Services are for families with children with mental, emotional, and/or behavioral difficulties. Education and training to become better advocates, parent support groups, one-on-one support, parent/community education, resource, center and newsletter.

 

SPED Child and Teen
They have listings for disability camps, workshops and events in Greater Massachusetts

 

WE MOVE
A not-for-profit organization for TS information and resources that utilizes creativity, innovation, and collaborative approaches to improve awareness, diagnosis, and management of movement disorders among people living with these conditions and the professionals who care for them.

 

Yesodot
Yesodot provides family-centered and directed support to Jewish and interfaith families challenged by disability from over 62 communities in the Greater Boston area. If you have a young, teenage, or adult family member with a developmental, physical, learning or other disability or mental illness they offer you and your family a series of useful and unique programs and educational workshops.

 

IDEA

 

Disability Rights Laws
Has information on IDEA

Health & Human Services Your Child’s Legal Rights

Health & Human Services Who Pays For Services

MA Department of Education
Guide to Chapter 688: Massachusetts Transitional Planning Program

Classroom Presentations and Sample Letters
*The following documents are copy-written by author Dawn Erickson. Reproduction is permitted for use as a template letter resource for parents. Use in written publications without permission is prohibited.

Example Classroom Parent Letter
Sample Letter for Classroom Presentation Request For Uncooperative School Principal
Classroom Presentation – Teacher Request Sample Letter
Example Classroom Speech about Tourette Syndrome Elementary Level (K – 4th)
Intro Letter to Classroom Teacher
Intro Letter to Classroom Teachers of Middle School Team

 

Peer Education

Specialty Schools & Tutors

Beal Street Academy
Beal Street Academy is a small private school serving students in grades 6 through 12. Their goal is to provide a fresh start for children who have struggled to achieve their full potential. They welcome students who have fallen behind due to illness, disability, or problems with a one-size-fits-all instruction model. In many cases they can help a student make up lost ground and quickly return to his or her referring school, newly equipped with self confidence and the skills to succeed.

The Fluency Factory
Serving the Boston, Quincy, and South Shore Areas of Massachusetts. They are an after-school tutoring center that uses the clearest, most advanced approach to teaching that is available. They work one to one with each student to individualize their learning program, so they can serve a variety of different student needs, from beginning reader to advanced high school student.

Special Education Parent Advisory Councils

Concord SEPAC & Concord Carlisle Special Education Parent Advisory Committee (CCSEPAC)
Great resource for Testing and Evaluating, IEPs, Other Student Documentation, Preparing for Team Meetings, and much more

Learning Disabilities Wordwide
Learning Disabilities Wordwide provides resources to local Parent Advisory Councils (Mass PACs) and special educators. They sponsor a Learning Disabilities Awareness month, work with the Children’s Museum on a promotional kit, and distributes a CD CD produced by LDW for pediatricians, “The Pediatrician and the Child with Learning Disabilities” to dozens of pediatricians in the Bay State. They sponsor an annual conference in the fall.

MASSPAC
(Massachusetts Association of Special Education Parent Advisory Councils)

MASSPAC is an independent, nonprofit, tax-exempt member association of parents, school based councils, professionals and agencies. The mission of MASSPAC is to maintain a state-wide network of parents, professionals, and school-based councils in a shared effort to understand, respect, and support appropriate education for all children with special needs in our respective communities.

Quincy Parent Advisory Council to Special Education (QPAC)
On their website, they have information about QPAC and the Quincy Public Schools, as well as resources for and information about special education and disabilities.

The Tourette Association of America – Massachusetts Chapter would like to empower parents with the tools necessary to speak up and help their child. If you are interested in educating your child’s teachers about Tourettes please contact taama.info@gmail.com.

Publications That may be of Interest

Children with Tourette Syndrome: A Parents’ Guide by Tracy Haerle
A must-have for parents as conditions change. Teachers can also skim through the important, easy-to-read information.
ISBN: 0933149441

 

Front of the Class by Brad Cohen
Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had. An inspiring, true story about a young man’s triumph over Tourette Syndrome. DVD Now Available at Hallmark Gold Crown Stores & Accompanying Teacher’s Guide Available from National TSA

 

Life’s A Twitch!
A Canadian, Ph.D., Dr. Duncan McKinlay created funny songs about Tourette Syndrome.

 

Little Twitching Timmy The Turtle With Tourettes by Louis Centanni
ISBN: 9781412066662

 

Misconceptions about Tourette Syndrome Article
Contemporary Pediatrics, Vol. 21, No. 8, August 2004

Passing for Normal: A Memoir of Compulsion by Amy Wilinsky
ISBN: 076790186X

 

Planet Tic – Video Order Links
The Real World of Tourette Syndrome video and facilitator’s guide
This video was developed for adolescents 12 to 15 years of age; however, it may be used with older adolescents when appropriate. It is also an excellent video to be used for educational presentations with adults.

 

You’ve Got a Friend video and facilitator’s guide
You’ve Got a Friend was developed to educate peers of children with TS, 7 to 11 years of age. The video works well in classroom presentations, and the guide offers many activities and resources to supplement a presentation.

 

Taking Tourette Syndrome To School by Tira Krueger
ISBN: 1891383124 – For elementary-aged children

 

This is Not Profanity by Matt DeFaveri
This is Not Profanity opens with an informative introduction to Tourette Syndrome and then quickly unfolds into a chronological account of Matt DeFaveri’s experience with TS from kindergarten through fifth-grade years. There are laughs (plenty of them), there are tears, and most of all, there is learning. Matt was diagnosed with Tourette’s Syndrome at age six. He’s now 22 and a recent graduate from Emerson College, Boston with a degree in Writing, Literature and Publishing.
Jeff Seglin, Ethics Columnist for the New York Times Syndicate called This Is Not Profanity “a touching story of a young boy who struggled to be ‘normal’ when all around him seemed a tormenter.”
Richard Hoffman, author of Half the House: A Memoir said, “Matt DeFaveri gives us the truth, both barrels, about growing up with Tourette’s. This Is Not Profanity is funny, heartbreaking, informative, and inspiring. DeFaveri is a young writer to watch.”
You can purchase Matt’s book on his Web site

 

Tics and Tourette Syndrome: A Handbook for Parents and Professionals by Uttom Chowdhury
ISBN: 184310203X

 

What Makes Me Tic
Chris Mason has recently finished his memoir about his life with Tourette Syndrome and Obsessive Compulsive Disorder. He did not write this book to make money. He wrote it to raise awareness for TS. Please contact Chris Mason cmason@astound.net directly, if you would be interested to get information emailed to you. He is also looking to write or help write the memoir of someone who has TS. He was hoping to be able to spread the word that he is taking on this project. Please direct anyone who is interested to Chris

A note from Chris Mason: “I am a forty-three-year-old male. I live in San Francisco, CA. I have Tourette Syndrome and Obsessive Compulsive Disorder. I began having symptoms of both disorders at the age of six, but I wasn’t diagnosed until age twenty. For fourteen years I wondered why I had these strange symptoms and why I was different than everyone else. I had trouble in school because of behavior problems and learning disorders. My neurologist also thinks I have some other undiagnosed mental illnesses. I am now on medication, which has totally rid me of all my tics, but at a price. The medication has many side effects that I have been dealing with and trying to control, with no avail, for the twenty-three years I have been taking it. I know that unless there is a cure I will be on medication for the rest of my life. I wrote this book because Tourette Syndrome is a very misunderstood disorder. It is my hope that the readers of this book will understand it just a little bit better. My main goal of writing this book is not to make money. It is to raise awareness. Even if just one person learns more about Tourette Syndrome as a result of reading this book it will be well-worth the time and effort it took to write it. This is my story about what makes me “tic”. At this time it is just an ebook, but it will hopefully be published as a paperback book in the near future.”

Medical Resources that may be of Interest

* Tourette Association of America and the Tourette Association of America – Massachusetts Chapter listings are not based upon a direct investigation of these professionals, nor does TSA/TSA-MA have the ability to assess their competence in dealing with specific Tourettes cases. It is suggested that you contact the local professional association for the discipline(s) you need.

* You should personally question and investigate each provider to better assess their suitability for your particular needs as well as any anticipated fees.

Cognitive Behavioral Therapy
ABCT
Association for Behavioral and Cognitive Therapies – You can search for a CBT Therapist near you.

 

NACBT Online Headquarters
National Association of Cognitive-Behavioral Therapists – You can search for a mental health professional near you who is certified by the National Association of Cognitive-Behavioral Therapists.

 

Medical Reference Resources

The Family Resource Center/Behavioral Health Library
North Shore Children’s Hospital, Salem, Massachusetts
(978) 354-2660
This center provides a range of resources through our Behavioral Health Library. Staff members organize and run conferences, workshops and family support programs, and are on hand to assist you with your research needs.

 

NAMI Massachusetts
National Alliance on Mental Illness

400 West Cummings Park, Suite 6650
Woburn, MA 01801
(800) 370-9085
(781) 938-4048

 

National Institutes of Health (NIH) Genetics Home Reference
The National Institutes of Health (NIH) Genetics Home Reference website provides helpful information on genetic topics, including descriptions of such genetic disorders as TS and definitions to terms that may be used by a physician in discussion of a genetic disorder.

 

Other Associations

Anxiety

Anxiety Disorders Association of America
The Anxiety Disorders Association of America (ADAA) is the only national nonprofit organization solely dedicated to informing the public, health care professionals, and legislators that anxiety disorders are real, serious, and treatable. ADAA promotes the early diagnosis, treatment, and cure of anxiety disorders, and it is committed to improving the lives of the people who suffer from them. There is also a list of local support groups and lists of therapists in the MA area.

 

Mental Health Resources for College Students
“With 40 million American adults suffering from anxiety, and most of them experiencing their first episode before the age of 22, it is critical that we address the mental health concerns of college-aged students. Our guide discusses the most common mental health issues facing students, including anxiety, and clearly outlines several options for finding treatment and support.”

 

Aspergers

Asperger’s Association of New England, various support groups

 

Attention-Deficit/Hyperactivity Disorder

Children and Adults with Attention-Deficit/Hyperactivity Disorder
508-302-2425 and Yahoo Group
metrowest@chadd.net

Children and Adults with Attention-Deficit/Hyperactivity Disorder is the nation’s leading non-profit organization serving individuals with AD/HD and their families. CHADD has over 16,000 members in 200 local chapters throughout the U.S. Chapters offer support for individuals, parents, teachers, professionals, and others. The local chapter is MetroWest Satellite of CHADD.
Parent support groups are held every 2nd Tuesday of the month (Jan., Feb., March, May, Sept., Oct., Nov.). Time: 7-9 PM at Goodnow Library Meeting Room, 21 Concord Road, Sudbury, MA.

 

Bipolar

Child and Adolescent Bipolar Foundation
The Child and Adolescent Bipolar Foundation (CABF) is a parent-led, not-for-profit, Web-based membership organization of families raising children diagnosed with, or at risk for, pediatric bipolar disorder. They provide information, resources, and links to local support groups and professionals:
820 Davis St., Ste. 520
Evanston, IL 60201
(847) 492-8519 Phone
(847) 492-8520 Fax

 

Obsessive Compulsive Disorder

OC Foundation
This organization for the support and understanding of obsessive compulsive disorders (OCD) has listings of support groups, educational and medical resources, and information for parents.

Resources from MA Chapter

Applied Theater with Teens with TS
PROJECT HAPPENING IN THE GREATER BOSTON AREA

Rebecca Erenrich is a senior at Brandeis University in Waltham, MA. She is majoring in Psychology and minoring in Theater Arts. She is currently taking a course called Playing for Change: Community Building and Social Change on Stage. This is a course on applied theater, which consists of using games, exercises and activities to make a difference. Each student must select an issue of importance and propose a means to use theater for making an impact on that issue. She was offered the distinct opportunity to actually implement her proposal.

This process will be an exploration for her as well, but together she thinks we can have an impact! She is 22 years old and was diagnosed with Tourette Syndrome when she was seven. She has seen from personal experience the impact that theater and “play” (finding one’s inner child) can have on issues that stem from TS.

Her vision on how to use applied theater with people with Tourette Syndrome is purely based off of her own experience. She does not have any scientific studies suggesting that it lessens tics. But she does notice in herself that the activities, games, and exercises, lessen her tics, and she hopes that it might do the same for others. In addition, the course discussion revolves around oppression. She sees the social impacts of Tourette Syndrome, such as bullying and loneliness, as a form of oppression.

Having said this, she would be very interested in spending some time with teens/high-school students with Tourette Syndrome exploring these techniques with them. She has done a substantial amount of work with adolescents throughout her college years and has a grasp on what works with teens and what doesn’t.

If you or someone you know might be interested in exploring this project with her, please email me her: Erenrich@brandeis.edu. Feel free to email with any questions as well.
She has not picked a location, day or time, as this will depend on the availability of those who express interest.

 

Bridging the Chasm
Licensed social worker (LICSW) in Franklin County, MA, who presents seminars on various child and adolescent mental health conditions and issues. “As a fellow ticcer I know too well the challenges faced by those with TS and other co-morbid disorders,” said Earles.

 

Drum Echoes
If you are looking for a unique conference presenter or dynamic entertainment for your fundraising event, please consider contacting TSA Member and international advocate, Matt Giordano.

Through his business, Drum Echoes, Inc., Matt offers several options:

1. DRUM CIRCLE in which participants are invited to join in and play a percussion instrument under Matt’s direction. Previous musical experience is not required. This is a no-pressure, fun gathering anyone can enjoy.

2. DISABILITY AWARENESS PRESENTATION Matt discusses his experiences, incorporating a PowerPoint, brief drum performance, and time for questions.

3. PERFORMANCE IN A HOUR! Matt will work with a small group (10-30) and within an hour have a mini-performance ready to show!

4. PERFORMANCE COORDINATION for your camp, school, or church group that is looking for a unique way to gather people together, encourage teamwork, promote creativity, and have fun. Matt directs the whole endeavor, including rehearsals and a final performance.

Your members will identify with Matt’s experiences growing up with Tourette’s Syndrome, Attention Deficit Disorder and Obsessive Compulsive Disorder. He understands the challenges involved and offers his strategies for coping and overcoming difficulties.

The BBC (British Broadasting Corporation) came to Rochester in January to film one of Matt’s Drum Circles and to interview Matt and his family. And Matt was also interviewed and filmed by ABC’s Primetime!

Drum Echoes Flyer

Drum Echoes Quote

Drum Circle Articles
Tourette Association Article
“Caring Today” magazine article

Ask about Drum Echoes’ special non-profit rate and possible underwriting for your drum event:
Matt Giordano
Drum Echoes, Inc. President
matt@drumechoes.org
585-750-9875

Ask about Drum Echoes’ special non-profit rate and possible underwriting for your drum event:
Matt Giordano
Drum Echoes, Inc. President
matt@drumechoes.org
585-750-9875

Financial Planning for Special Needs Families
David Harmon CLU, ChFC, MBA
AXA Advisors, LLC/Boston Branch
40 William St. Suite 200
Wellesley, MA 02481
781-237-8336 (Phone)
781-237-8172 (Fax)

Planet Tic
Educational information geared toward a diversity of people: teachers, students, parents, etc.

Prince’s Sensory Delights
Susan Donohoe, a 20-year pediatric Occupational Therapist, developed a novel clothing line targeting children with neurological and developmental disorders such as autism, SPD, tourettes, dyspraxia, etc. along with a very successful childrens apparel designer. The clothing is designed to be beautiful, non-stigmatizing, while delivering neurolical based theraputic aspects and has been presented at conferences, walks, etc., with high acclaim.

 

Leadership

Mike Robinson, Chapter Chair
Barbara Fink, Chapter Chair
Kelley Seay, Treasurer
Stevany Matthews, Secretary
Steve Alexander, Board Member
Christine Joyal, Board Member
Linda M. Isbell, Board Member
Steve Fink, Board Member
Ericka Benson, Board Member
Josh Del Viscovo, Board Member