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Online Support Groups for Tourette Syndrome

In cooperation with the US Centers for Disease Control and Prevention (CDC), the Tourette Association of America is pleased to offer a series of online support groups. These support groups are available for people who may be in underserved areas with limited access to resources and support.

 

The TAA is currently offering online support groups for parents and young adults within the Tourette Syndrome and Tic Disorder community. For current offerings, please see below for detailed descriptions of each group. Parents may only participate in one group, so please register for the group that best suits your needs. Priority for these groups will go to those who are in areas with limited access to support and who have not previously participated in a group.

 

PLEASE NOTE: 

  1. To participate, the only equipment you will need is an internet connection on a computer, iPad/tablet or similar device, and a working microphone. A web cam is not necessary; however, you will be able to see the facilitator and are invited to join the meeting using your web cam. All support groups will be held on the Zoom platform.
  2. Space for these support groups is extremely limited and registration is on a first come, first serve basis. Due to the limited space, please only register to join if you intend to be fully involved and participate in all the group sessions.
  3. All groups are scheduled in Eastern Standard Time.
  4. Once each group has been filled, those interested in participating in the next session will be added to the waitlist.

 

To apply for one of the parent groups or for the young adult support group, please click here to fill out the form. On the form you will be able to specify which group you would like to participate in.

 

For more information and to apply for the Spanish-speaking parent group, please click here to fill out the form.

 

If you have any questions, please reach out to Brenda Peart, brenda.peart@tourette.org.

Online Support Groups for Parents

Young Adult Support Group:

Second Wednesday of the month from 7:00-8:30pm EST.

Audience: Young adults, ages 18-25, who have a diagnosis of Tourette Syndrome or another Tic Disorder.

Description: This group is intended to bring together young adults within the TS and Tic Disorder community and provide access to support and resources they may be looking for. Additionally, Young Adults will be able to share their experiences living with the condition and support one another. This group is ongoing and interested participants will be accepted on a rolling basis.

 

Session 1: October 12, 2022 – Topic: Welcome and Introductions

Session 2: November 9, 2022 – Topic: Personal Relationships and Social Situations

Session 3: January 11, 2023 – Topic: Stress Management and Regulating Emotions

Session 4: February 8, 2023 – Topic: Treatment for Tourette Syndrome

Session 5: March 8, 2023 – Topic: Co-occurring Conditions and Tic Disorders

Session 6: April 12, 2023 – Topic: TAA Rising Leaders Opportunities

Session 7: May 10, 2023 – Topic: Accommodations

Session 8: June 14, 2023– Topic: Self-Advocacy

Session 9: July 12, 2023 – Topic: Workplace Interactions

Session 10: August 9, 2023 – Topic: Applying to College/ work

Session 11: September 13, 2023 – Topic: Group Choice

Session 12: October 11, 2023 – Topic: Helpful Resources

Facilitator: Debi Hinerfeld

Debi Hinerfeld, PhD, OTR/L, FAOTA has been an occupational therapist for 30 years, working with children, adolescents, and adults, in private practice, in schools, and in hospital settings. She is certified in Comprehensive Behavioral Interventions for Tics (CBIT) and has undergone post professional training and certification in sensory integration evaluation and intervention. Debi completed her doctorate in Health Sciences with a focus in Healthcare Administration in June 2017 and has taught at two graduate level occupational therapy programs in Atlanta, Georgia.

During the summers of 2016 and 2017, Debi greatly enjoyed serving as a member of the support staff to campers at Camp Twitch and Shout in Winder Georgia, a one-week summer camp for kids who have tics. It was here that she discovered the remarkable spirits of kids and young adults with tic disorders and the personal, functional, and societal challenges that they face on a daily basis.

As an occupational therapist certified in CBIT, Debi utilizes her unique OT perspective that considers the whole person and the challenges of engagement and performance in meaningful activities that a person needs and wants to do. Debi enjoys using a collaborative, function-based approach with each of her clients that promotes participation and independence, allowing each person to integrate new strategies to live life to its fullest.

Personally, Debi has been married to her husband Alex for 25 years and has a 21-year-old daughter, Madelyn, who is a graduate student at the University of Georgia.  She also has two rescue dogs, a Goldendoodle and a Great Pyrenees.

LGBTQ+ TS Support Group:

Third Thursday of the month from 7:00 – 8:30pm EST.

Audience: Young Adults 18-25, who have a diagnosis of Tourette Syndrome or another Tic Disorder and also identify as part of the LGBTQ+ community.

Description: What does it mean to be queer with Tourette? This group is intended to provide young adults with TS and other Tic Disorders a safe space to discuss the intricacies of what it means to have TS and be a part of the LGBTQ+ community. Young adults will talk about finding joy and strength in their uniqueness while also exploring an identity that may have changed since having Tourette and being queer.

 

Session 1: November 10, 2022 – Topic: Welcome and Introductions

Session 2: December 15, 2022 – Topic: College & Work

Session 3: January 19, 2023 – Topic: Relationships and Dating

Session 4: February 16, 2023 – Topic: Family and Community Ties

Session 5: March 16, 2023– Topic: Online, gaming, & social media

Session 6: April 20, 2023 – Topic: Queer & Tourette / Think BIG and plan for the future

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Facilitator: Matthew (Matt) Capriotti

Bio: Matthew (Matt) Capriotti is a licensed psychologist and an Associate Professor of Psychology at San Jose State University in San Jose California. Matt has over 10 years of experience working with people with Tourette Syndrome to help them thrive with the help of CBIT and other interventions. Matt has also conducted extensive research aimed at developing interventions to manage tics, understanding factors that drive tics, and increasing quality of life for people with tic disorders. Matt is also a proudly out queer person. Since 2015, he has researched LGBTQ+ health through The PRIDE Study (pridestudy.org), and he has been involved with LGBTQ-related groups in his local community. Originally from a small-ish town in Florida, Matt now lives in San Francisco, California, where he enjoys hiking, seeing live music with friends, cooking, and traveling.

Parent Support Group #5:

Third Tuesday of the month from 7:00 – 8:30pm EST.

Title: Tourette Syndrome 101

Audience: Parents of children with TS or Tic Disorders who have been newly or recently diagnosed, within the last 6 months to one year.

Description: This support group will focus on the basics of Tourette Syndrome. Parents will learn exactly what TS is, tips for management strategies, and meet other parents who are also early on in their TS journey. Each meeting will include a brief education session regarding the specific topic listed below, followed by group discussion and conversations regarding real-life application, current experiences and strategies that have been helpful.

Session 1: October 18, 2022 – Topic: Introductions and Welcome

Session 2: November 15, 2022 – Topic: Welcome to the Iceberg

Session 3: January 17, 2023 – Topic: Is it TS or Behavior?

Session 4: February 21, 2023 – Topic: Supporting your Learner

Session 5: March 21, 2023 – Topic: The Family Dynamic

Session 6: April 18, 2023 – Topic: Next Steps

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Facilitator: Tonya Thomas

Tonya Thomas served as Director or Programs with the TAA and has her master’s degree in social work from Fordham University. Prior to the TAA, Tonya was a program officer with the Long Island Community Foundation – a subsidiary of the New York Community Trust. She supported the Foundation’s competitive grantmaking by advocating for community organizations and projects that improved the quality of life for all Long Islanders. Tonya also worked on special initiatives that bring about much needed social change.

Prior to LICF, as the Director of Partnership Development and Programming, Tonya helped develop, launch, and market the pilot of the First-Year Community Engagement Program at SUNY College at Old Westbury. She helped create an award winning, uniquely collaborative, course-embedded, community-based learning program where she set up MOU’s and engaged over 60 non-profit partner organizations and government agencies on Long Island and the Metropolitan area.

Tonya also worked in the Entertainment industry for over 13 years, she spent the first few years of her career working for television shows like Entertainment Tonight and The Jane Whitney Show. Tonya also worked as a researcher and producer for various talk show hosts – Tom Bergeron, Rolonda Watts, and Montel Williams. Tonya also worked in the Film Marketing Department at Twentieth Century Fox Film Corporation, where she, as the Marketing Research Manager, managed the film marketing research for all studio films released nationally.

Tonya enjoys reading, watching movies, volunteering, and working with teens. She is currently a member of the Long Island Chapter, The Links, Inc., an Associate member of the Nassau County Chapter of Jack and Jill and serves on the board of the Rockville Center Education Foundation. Tonya lives on Long Island with her husband and two daughters.

Parent Online Support Group: Spanish-speaking parents of children with TS

In cooperation with the Centers for Disease Control and Prevention (CDC), the Tourette Association of America is pleased to offer an online support group for Spanish-speaking parents of children with Tourette Syndrome or Tic Disorders. This support group is available for people who may be located in underserved areas with limited access to resources and support. The support group will meet once a month from October 2022 to April 2023 for approximately 90 minutes.

In order to participate, the only equipment you will need is an internet connection on a computer, iPad/tablet or similar device, and a working microphone. A web cam is not necessary; however, you will be able to see the moderator and are invited to join the meeting using your web cam.

 

Please click here to register for the online support group. You will be notified and given further instructions in the coming weeks.

 

If you have any questions, please reach out to Brenda Peart, brenda.peart@tourette.org

 

The support group will meet on the 2nd Monday of the month, October until April, from 7:30pm-9:00pm EST. Please see below for the dates of each session and the topics that will be covered.

 

Session 1: October 10, 2022 – Topic: Welcome and introduction to the group!

Session 2: November 14, 2022 – Topic: College/ School and education

Session 3: January 9, 2023 – Topic: TS and family/ friends

Session 4: February 13, 2023 – Topic: How to handle other disorders

Session 5: March 13, 2023 – Topic: Special guest TBD

Session 6: April 10, 2023 – Topic: Taking care of ourselves

PattyOSGFacilitator: Patty Mendoza, M.S.

Bio: Patty Mendoza is the Lead School Psychologist in the Kings Canyon Unified School District (KCUSD). She holds a Master’s degree from California State University, Fresno. Her experience as a School Psychologist has been extensive, serving grades from preschool to high school.

Her experiences include a broad range of services, such as psychoeducational evaluations, consultations with teachers, parents, and administrators, counseling, crisis interventions, threat assessments, functional behavior assessments, behavior intervention plans, manifestation determinations, collaboration in 504 plans, collaboration in the implementation and monitoring of Positive Behavioral Interventions & Supports (PBIS), district-level Nonviolent Crisis Intervention (NCI), and district-level Safety Care trainings.

In addition, she is a Comprehensive Behavioral Intervention for Tics (CBIT) practitioner. She participated in the Treating Tourette Together (TTT) project, which brought together people with Tourette Syndrome, their families, clinicians, researchers, and other stakeholders to set an agenda for the next generation of CBIT research.

En Español 

En cooperación con los Centros para el Control y la Prevención de Enfermedades (CDC), la Asociación Tourette de América se complace en ofrecer un grupo de apoyo en línea para padres de habla hispana de niños con síndrome de Tourette o trastornos de tics. Este grupo de apoyo está disponible para personas que pueden estar ubicadas en áreas desatendidas con acceso limitado a recursos y apoyo. El grupo de apoyo se reunirá una vez al mes desde octubre de 2022 hasta abril de 2023 durante aproximadamente 90 minutos.

Para participar, el único equipo que necesitará es una conexión a Internet en una computadora, iPad / tableta o dispositivo similar, y un micrófono que funcione. No es necesaria una cámara web; sin embargo, podrá ver al moderador y se le invitará a unirse a la reunión utilizando su cámara web.

Haga clic aquí para registrarse en el grupo de apoyo en línea. Se le notificará y se le darán más instrucciones en las próximas semanas.

Si tiene alguna preguntas, comuníquese con Brenda Peart, brenda.peart@tourette.org

El grupo de apoyo se reunirá el segundo lunes del mes, de octubre hasta abril, de 7:30 p.m. a 9:00 p.m. EST. Por favor vea a continuación las fechas de cada sesión y los temas que se cubrirán.

Sesión 1: 10 de octubre – Tema: ¡Bienvenida e introducción al grupo!

Sesión 2: 14 de noviembre – Tema: Colegio / Escuela y educación

Sesión 3: 9 de enero – Tema: TS y familia / amigos

Sesión 4: 13 de febrero – Tema: Cómo manejar otros trastornos

Sesión 5: 13 de marzo – Tema: Invitado especial TBD

Sesión 6: 10 de abril – Tema: Cuidarnos

PattyOSG

Facilitadora: Patty Mendoza, M.S.

Biografía: Patty Mendoza es la psicóloga escolar principal en el Distrito Escolar Unificado de Kings Canyon (KCUSD). Tiene una maestría de la Universidad Estatal de California, Fresno. Su experiencia como psicóloga escolar ha sido extensa, sirviendo grados desde preescolar hasta secundaria.

Sus experiencias incluyen una amplia gama de servicios, como evaluaciones psicoeducativas, consultas con maestros, padres y administradores, asesoramiento, intervenciones de crisis, evaluaciones de amenazas, evaluaciones de comportamiento funcional, planes de intervención de comportamiento, determinaciones de manifestaciones, colaboración en planes 504, colaboración en la implementación y monitoreo de Intervenciones y Apoyos Conductuales Positivos (PBIS), Intervención de Crisis No Violenta (NCI) a nivel de distrito, y  capacitaciones de atención de seguridad a nivel de distrito.

Además, es practicante de Intervención Conductual Integral para Tics (CBIT). Participó en el proyecto Treating Tourette Together (TTT), que reunió a personas con síndrome de Tourette, sus familias, médicos, investigadores y otras partes interesadas para establecer una agenda para la próxima generación de investigación CBIT.

Parent Support Group #1:

Second Tuesday of the month from 6:00 – 7:30pm EST.

Title: Tourette Syndrome 101

Audience: Parents of children with TS or Tic Disorders who have been newly or recently diagnosed, within the last 6 months to one year.

Description: This support group will focus on the basics of Tourette Syndrome. Parents will learn exactly what TS is, tips for management strategies, and meet other parents who are also early on in their TS journey. Each meeting will include a brief education session regarding the specific topic listed below, followed by group discussion and conversations regarding real-life application, current experiences and strategies that have been helpful.

Session 1: July 12, 2022 – Topic: Introductions and Welcome

Session 2: August 9, 2022 – Topic: Welcome to the Iceberg

Session 3: September 13, 2022 – Topic: Understanding Behaviors in TS

Session 4: October 11, 2022 – Topic: Supporting your Learner

Session 5: November 8, 2022 – Topic: Relationships in TS

Session 6: January 10, 2023 – Topic: Next Steps

Facilitator: Dr. Heather Simpson

Heather Simpson, OTD, OTR/L, is an Occupational Therapist at UF Health Fixel Institute for Neurological Diseases in Gainesville, Florida. Heather serves as the Tourette Association Centers of Excellence Coordinator for the Institute. Dr. Simpson has a pediatric specialty from the American Occupational Therapy Association and has been treating both adults and children with tic & Tourette Disorders since 2012. Her current focus is on Occupational Therapy management for tic disorders and the use of CBIT to treat tics and improve quality of life. She has participated in multiple small research studies and webinars related to occupational and daily life functioning for those with Tic Disorders. Dr. Simpson has been allotted opportunities for advocation and training to Occupational Therapists and other allied health professionals in the management of Tic Disorders, including a chapter in 10 Secrets to a Happier Life with Tourette Syndrome. She currently serves on the TS-BTI faculty for CBIT, helping train allied health professionals in the management of tic disorders around the country.

Parent Support Group #2:

Second Thursday of the month from 7:00 – 8:30pm EST

Title: Living with Tourette Syndrome

Audience: Parents of children/ teens with TS or Tic Disorders who are beyond the diagnosis.

Description: This support group is for parents who have experience living with TS and are looking for support from other parents during the ongoing and more challenging aspects of Tourette Syndrome. Each meeting will include a brief education session regarding the specific topic listed below, followed by group discussion and conversations regarding real-life application, current experiences and strategies that have been helpful.

Session 1: July 14, 2022 – Topic: Introductions and Welcome!

Session 2: August 11, 2022 – Topic: Welcome to the Iceberg

Session 3: September 8, 2022 – Topic: Resources and Therapies

Session 4: October 13, 2022 – Topic: Relationships

Session 5: November 10, 2022 – Topic: Working Towards Independence

Session 6: January 12, 2023 – Topic: Wildcard!

Facilitator: Kathy Giordano

Kathy Giordano has been a resource for families and schools since 1993 providing support and information regarding challenges related to Tourette syndrome. For over thirty years, she has presented internationally regarding Tourette syndrome, Functional Behavioral Assessments, and positive/proactive behavioral management plans.  Kathy along with her son, Matt, authored a book titled: A Family’s Quest for Rhythm: Living with Tourette, ADD, OCD and Challenging Behaviors. She has also been serving as the facilitator for a support group for parents of children with Tourette and explosive behaviors for the past 5 years in Rochester, NY.

Parent Support Group #3:

First Thursday of the month from 7:00 – 8:30pm EST.

Title: Tourette Syndrome and Explosive Behaviors/Rage

Audience: Parents of children/teens with TS or Tic Disorders who experience explosive outbursts. For this group, we ask that only parents of children who have a TS or Tic Disorder diagnosis under the age of 11 apply to participate.

Description: Tourette Syndrome impacts people and families differently resulting in different levels of need. TAA is offering monthly virtual meetings for parents of children with explosive behaviors. Each meeting will include a brief education session regarding the specific topic listed below, followed by group discussion and conversations regarding real-life application, current experiences and strategies that have been helpful.

Session 1: July 7, 2022 – Topic:  Recognizing ‘disinhibition’ impact on symptoms and rage.

Session 2: August 4, 2022 – Topic: How related disorders can increase explosive behavior.

Session 3: September 1, 2022– Topic: De-escalating strategies to help reduce explosive behaviors.

Session 4: October 6, 2022 – Topic:  Federal laws which protect students from suspensions/expulsions

Session 5: November 3, 2022 – Topic: TAA’s resource “Functional Behavior Assessments & Positive Proactive Plans” can be critical when developing behavior intervention plans

Session 6: January 5, 2023 – Topic: School Assessments/Evaluations: Simple tips parents can use during IEP/504 Plan meetings

Facilitator: Kathy Giordano

Kathy Giordano has been a resource for families and schools since 1993 providing support and information regarding challenges related to Tourette syndrome. For over thirty years, she has presented internationally regarding Tourette syndrome, Functional Behavioral Assessments, and positive/proactive behavioral management plans. Kathy along with her son, Matt, authored a book titled: A Family’s Quest for Rhythm: Living with Tourette, ADD, OCD, and Challenging Behaviors. She has also been serving as the facilitator for a support group for parents of children with Tourette and explosive behaviors for the past 5 years in Rochester, NY.

Parent Support Group #4:

Third Thursday of the month from 7:00 – 8:30pm EST.

Title: Tourette Syndrome and Explosive Behaviors/Rage

Audience: Parents of children/teens with TS or Tic Disorders who experience explosive outbursts. For this group, we ask that only parents who have a child with a TS or Tic Disorder diagnosis over the age of 12 years old apply to participate.

Description: Tourette Syndrome impacts people and families differently resulting in different levels of need. TAA is offering monthly virtual meetings for parents of children with explosive behaviors. Each meeting will include a brief education session regarding the specific topic listed below, followed by group discussion and conversations regarding real-life application, current experiences and strategies that have been helpful.

Session 1: July 21, 2022 – Topic:  Recognizing ‘disinhibition’ impact on symptoms and rage.

Session 2: August 18, 2022 –Topic:  How related disorders can increase explosive behavior.

Session 3: September 15, 2022 –Topic:  De-escalating strategies to help reduce explosive behaviors.

Session 4: October 20, 2022 – Topic:  Federal laws which protect students from suspensions/expulsions

Session 5: November 17, 2022 – Topic: TAA’s resource “Functional Behavior Assessments & Positive Proactive Plans” can be critical when developing behavior intervention plans

Session 6: January 19, 2023 – Topic: School Assessments/Evaluations: Simple tips parents can use during IEP/504 Plan meetings

Facilitator: Kathy Giordano

Kathy Giordano has been a resource for families and schools since 1993 providing support and information regarding challenges related to Tourette syndrome. For over thirty years, she has presented internationally regarding Tourette syndrome, Functional Behavioral Assessments, and positive/proactive behavioral management plans. Kathy along with her son, Matt, authored a book titled: A Family’s Quest for Rhythm: Living with Tourette, ADD, OCD, and Challenging Behaviors. She has also been serving as the facilitator for a support group for parents of children with Tourette and explosive behaviors for the past 5 years in Rochester, NY.