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

POSTPONED: MARCH 2020 TAA-MGH Family Day Symposium

THIS EVENT WILL BE RE-SCHEDULED. The Partners Administration has prohibited public events at this time. We will post a new date for this forum as soon as we can.

Please contact names below or TAA with any specific questions.

TAA-MGH Family Day Symposium

WHAT IS IT ABOUT? Please join the Tourette Center of Excellence at Massachusetts General Hospital and the Tourette Association of Massachusetts for a FREE presentation supporting families affected by Tourette and Tic Disorders. This symposium will provide an overview of tics, Tourette Syndrome, and co-occurring conditions, medical treatment and medications, Tourettic OCD, CBIT, intermittent explosive episodes, and neuropsychology

WHO WILL PRESENT? Massachusetts General Hospital’s Dr. Jeremiah Scharf, Dr. Erica Greenberg, Dr. Sabine Wilhelm, Dr. Molly Colvin, Dr. Stuart Ablon, and TAA’s Education Advocate, Steve Alexander.

WHERE WILL IT BE?

Public transportation to campus is highly encouraged. If driving, you will need to pay for parking at the Fruit Street, Parkman Street, Yawkey Center, or Charles River Plaza garage.

Pre-registration will be required to attend.

Stay tuned for an email with the link to RSVP!

For questions, please contact:

Pamela at pam.tricca@verizon.net

Amrita at aray11@mgh.harvard.edu

Sarah at smiller43@mgh.harvard.edu

Daisy at dtnoriega@mgh.harvard.edu

____________________________________________________________________

Free Webinar for PROVIDERS: Cognitive Behavioral Therapy for OCD

February 6, 2020, . As part of a provider webinar series, this free webinar, led by Dr. Sabine Wilhelm, is geared towards providers interested in working with patients suffering from Obsessive Compulsive Disorder (OCD). Discussion will focus on the assessment of OCD as well as evidence-based interventions such as psychoeducation, cognitive strategies, mindfulness, exposure and response prevention. CME credit is available upon completion.

To register, see this link: https://tourette.org/provider-webinar-series-cognitive-behavioral-therapy-for-ocd/?emci=27928624-412b-ea11-a601-2818784d6d68&emdi=107b79cd-5f2d-ea11-a601-2818784d6d68&ceid=4570415

 

 

 

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.

MGH Clinical Trial

Is your child suffering from tics and ADHD?

The Massachusetts General Hospital Boston is conducting a no-cost clinical trial with children ages 11-17 years old who are both bothered by tics and are suffering from ADHD.

Children who are eligible for the study will receive a diagnostic evaluation and either a standard or modified course of comprehensive behavioral intervention for tics (CBIT) at no cost.

For more information, please call 617-643-6204 or email jfehring@mgh.harvard.edu

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 Association of America – 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 (2 year renewal, Fall 2019-2021)

Mike Robinson lives in Mansfield, MA with his wife Julie and three children, all of whom have 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, Youth Ambassador Coordinator (2 year renewal, Fall 2019-2021)

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 is the Dean of Students and a teacher at the Russian School of Mathematics in Shrewsbury, MA. Previously, she worked 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 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

 

Ericka Benson, Secretary (2 year renewal, Fall 2019-2021)

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

 

Mary Farrell, Treasurer

Mary resides with her family in Scituate, MA. She graduated from Trinity College with a BA in Economics. She has two wonderful sons, and an infamous chocolate lab that is adored by all. Her youngest son, Andrew, was officially diagnosed with Tourette in 7th grade. He is currently a student at Boston College studying business.

Mary is an auditor with the United States Securities and Exchange Commission. She audits investment advisors, hedge funds and private equity firms. She is a Member of the Greater Boston Federal Executive Board and a Member/Co-founder of the SEC’s Boston Regional Office Diversity and Inclusion Committee. She belongs to the Junior League of Boston encouraging young girls to enter and succeed in Science, Technology, Engineering and Math fields. She is a life-long Religious Education teacher and a mezzo-soprano in her church choir.

Mary has been a member of TAA for many years and is now looking to help others in need.

Mary can be contacted via email at mfarrell.taama@gmail.com

 

Directors:

Marty Benson, Board Member (3 year term, Fall 2019-2022)

Marty resides in Brookline, Massachusetts. He graduated from The George Washington University in 2010 with BA in Criminal Justice. As an energetic child with ADHD, Marty had planned to pursue a career in law enforcement until the effects of a severe case of Lyme Meningitis disrupted his plan. Instead, Marty pursued a career in education and spent five years teaching elementary and high school English in both the Czech Republic and Hungary and working as a counselor at an American style summer camp in Croatia, serving two summers as program director. Following a severe cold in 2016, Marty began experiencing trouble walking as well as the onset of both motor and vocal tics. After several years of debilitating tics, it was finally determined that Marty was in part suffering from a case of Tourette’s Syndrome.

As Marty developed Tourette in his late twenties, he understands firsthand the many challenges people with Tourette and their families experience in regards to lifestyle changes, diagnosis, and treatment. He has been grateful to attend local chapter meetings and to meet other families in the Tourette community. Marty looks forward to working with the local chapter to assist others with Tourette as well as raising awareness of the condition.

Marty can be reached at benson.marty@gmail.com

 

Steve Fink, Board Member (2 year renewal, Fall 2019-2021)
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. Steve also traveled to DC in 2016 to attend the National Conference and to meet with members of Congress and the Senate. Steve and his son have participated in educator workshops and informational presentations at schools and Steve’s son, a recipient of the Zack Hollis award, was recently trained as a Rising Leader by the TAA in Orlando, FL. Steve lives in Shrewsbury with his wife, who is co-President of the Massachusetts Chapter of the TAA as well as Dean of Students at the Russian School of Mathematics in Shrewsbury, and their family.

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

 

Krista Hill, Board Member (3 year term, Fall 2019-2022)

After living 13 years in Phoenix, Krista recently moved back to Massachusetts with her husband, teenage son and 100 lb. boxer. When her son was diagnosed with Tourette in 5th grade, she turned to TAA for information and support. When she found that the local chapter in Arizona had been silent due to inactivity, she started a campaign to reactivate the organization. Working with national TAA members, as well as local medical health professionals, she helped transform revitalize the chapter into a thriving group. Serving as Chairperson for three years, she coordinated fundraising events, group gatherings, professional lectures and monthly support meetings. Her favorite activity was running the monthly meeting that provided information and a place to connect for adults and kids with TS, as well as their families.

Before her son was born, Krista worked as a corporate recruiter in the Boston area for 15 years, sourcing a range of positions that included software, finance, marketing and tech executives. After moving to Arizona, she also worked for two years as an educational assistant at the local elementary school, where she gained experience working with both educators and students. Her passion for working in the TS community grew as she and her family learned how to educate school personnel, as well as advocate for her son and other kids with TS. After handing over the reins of the Arizona Chapter, she was excited to have the opportunity to rejoin the TAA organization as a part of the Massachusetts team.

 

Christine Joyal, Board Member Emeritus
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 can be contacted via email at cjoyal.taama@gmail.com.

 

Jenifer Swirnoff, Board Member

Jenifer Swirnoff is an Editorial Director at LexisNexis/Matthew Bender where she has worked since 1998. For the past 12 years, she has led a team of legal editors who develop content and analytical tools to support attorneys in their research and drafting. Her team also provides domain expertise and guidance to the organization’s product-planning partners in connection with strategy, licensing and new product development.

Prior to this, Jen held positions in tax market planning and sales. Before joining LexisNexis, she practiced law in California as an estate planning attorney.

Jen’s oldest son was diagnosed with Tourettes and ADHD (inattentive type) in 2007 when he was in kindergarten after a confusing and difficult period ruling out other neurological conditions, including absence seizures. At the time, her family lived in New York where they experienced the profound hardships of navigating the school system and getting the support her son needed under an IEP.  While their move to Massachusetts was prompted by a job opportunity for her husband, a careful study was made of the special ed system in the various school districts to assess the likelihood of securing the services her required.

Jen and her family began to take advantage of the terrific resources and support offered by the Tourette Association of America – MA Chapter in 2014. By 2016, her son had applied for and was selected to become a MA youth ambassador in the Tourette Association of America Youth Ambassador Program. From the training in Washington, D.C. and the trip to the Hill (where he met Senator Elizabeth Warren) to the present day, with each awareness-building classroom presentation, this experience continues to be highly rewarding for Jen’s son and the whole family. She also enjoys supporting the TAA-MA board with event planning for the Tourette community.

Jen holds a B.A. from the University of California, San Diego (summa cum laude) and J.D. from the University of California, Berkeley. She lives in Lexington with her husband, two sons and their 7-pound dog.

Jenifer can be contacted by email at jswirnoff.taama@gmail.com

 

Pamela Tricca, Board Member, Facebook and Website Coordinator

Pamela Tricca lives in Westford with her husband and three children. After 16 years of being a stay-at-home mom, Pamela has ventured into a new vocation as an Orton-Gillingham-based reading tutor. It was through the struggles of her youngest son, Matthew, that she went into tutoring. Matthew was diagnosed with Tourette Syndrome in 2009 when he was in elementary school. It was through the TS Clinic at Mass General hospital in Boston where her family was connected with the Tourette Association of America.

TAA resources connected their family to local seminars and contacts with some very supportive and helpful people (some on this very list!). But it made a huge difference for Matty specifically just a couple years ago as his tics began appearing in school. Using the “Tools for Educators,” Pamela encouraged Matty to provide some concrete information and language for his teachers to help explain to the other students just what was going on. Matty is fortunate, He has a great support team — including his classmates. One friend (since pre-school) actually was relieved after the presentation: “We already knew it was just Matty being Matty, but now we know was it’s called.”

Someday, Pamela plans to write a book about all her kids and how they have each uniquely survived a gamut of experiences … but for now it’s a work in progress. She’s looking forward to working with the MA TA Chapter not only to be connected but also to be part of the support for others.

Pamela can be reached via email at pam.tricca@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 bfink.taama@gmail.com

 

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

 

2019
Joshua Yaar

2018
Matthew Tricca

2017
Allison Silver
Grace Rooney
Ellis Wright

2016
Brendan Robinson
Camden Alexander
Nate Swirnoff

2014
Abby Najarian

2011
Zachary Fink (Awarded the 2015 Zak Hollis Youth Achievement Award)

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

A Family’s Quest for Rythmn: Living with Tourette, Add, Ocd and Challenging Behaviors by Kathy and Matt Giordano (2012)

The Giordanos discuss Matt’s intense childhood symptoms and the family’s feelings of isolation and blame. A heartfelt story as this family struggles to find answers — and Matt’s chapter gives families advice and talks about the critical support he finally found that led to him starting his own company, Drum Echoes, Inc.

 

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.

MGH Clinical Trial: Is your child suffering from tics and ADHD?

The Massachusetts General Hospital Boston is conducting a no-cost clinical trial with children ages 11-17 years old who are both bothered by tics and are suffering from ADHD.

Children who are eligible for the study will receive a diagnostic evaluation and either a standard or modified course of comprehensive behavioral intervention for tics (CBIT) at no cost.

For more information, please call 617-643-6204

 

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

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

Current Board Members:
Mike Robinson, Chapter Co-Chair
Barbara Fink, Chapter Co-Chair and Youth Ambassador Coordinator
Ericka Benson, Secretary
Mary Farrell, Treasurer
Marty Benson, Board Member
Steve Fink, Board Member
Krista Hill, Board Member
Jenifer Swirnoff, Board Member
Pamela Tricca, Board Member, Facebook and Website Coordinator