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 offering 5 support groups: 3 parent groups, 1 group for Spanish-speaking parents, and 1 group for young adults ages 18-25. Please read the descriptions below for each group carefully and only register for the group that best suits your needs. Parents may only participate in one group.

PLEASE NOTE:

*Each parent group has now been filled, those interested in participating in the next session will be added to the waitlist.*

  1. 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 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.

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 contact Angela Sullivan, TAA Medical Project Specialist.

Online Support Groups for Parents

Parent Support Group – Tourette Syndrome 101 – FULL

*This support group has reached its capacity. Thank you for your interest. Those interested in the next session will be added to the waitlist.*

2nd Tuesday of the month. This group runs from 6:00-7:30pm EST.

Audience: Parents of children with TS or Tic Disorders who have been newly or recently diagnosed.

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 13 – Topic: Introductions and Welcome
  • Session 2: November 10 – Topic: Welcome to the Iceberg
  • Session 3: December 8 – Topic: Supporting Your Learner
  • Session 4: January 12 – Topic: Is it TS or Behavior?
  • Session 5: February 9 – Topic: The Family Dynamic
  • Session 6: March 9 – Topic: Next Steps

Facilitator: Dr. Heather Simpson
Heather Simpson, OTD, OTR/L is an Occupational Therapist and Adjunct Lecturer at the University of Florida, 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 in Occupational Therapy management for tic disorders, as well as use of CBIT to treat tics and improve quality of life. She has participated in multiple small research studies and multiple webinars related to occupational and daily life functioning for those living with Tic Disorders. Dr. Simpson has been allotted opportunities for advocation and training to Occupational Therapists, as well as other allied health professionals in 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 management of tic disorders around the country.

Parent Support Group – Living with Tourette Syndrome – FULL

*This support group has reached its capacity. Thank you for your interest. Those interested in the next session will be added to the waitlist.*

3rd Tuesday of the month. This group runs from 7:00-8:30pm EST.

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: October 20 – Topic: Introductions and Welcome!
  • Session 2: November 17– Topic: Welcome to the Iceberg
  • Session 3: December 15 – Topic: Resources and Therapies
  • Session 4: January 19 – Topic: Relationships
  • Session 5: February 16 – Topic: Working Towards Independence
  • Session 6: March 16 – Topic: Wildcard!

Facilitator: Tricia Kardon, RN

Tricia Kardon is a parent of a young adult with Tourette Syndrome. She lives in Athens, Georgia with her husband Eric, who is a retired Emergency Physician now working with medical professionals through the hospital system IT Department. Their  daughter Danielle is attending graduate school in Tennessee studying Occupational Therapy, and son Kevin recently graduated from the University of Georgia with a degree in Art. Kevin was diagnosed with anxiety at the age of 6, Tourette syndrome and learning disabilities at the age of 8, ADD and Asperger’s at the age of 10, and Crohn’s disease at the age of 13.

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Her experience in working with families affected by Tourette’s (TS) started with her son’s diagnosis when he was 8 years old. She became involved with the Tourette Syndrome Association’s Georgia Chapter in 2007 (now known as TICS of GA). From 2007 until 2010 her primary responsibility was to support families in Georgia with the occasional need to help in other surrounding states as well. By 2010, Camp Twitch & Shout had grown tremendously with over 110 campers and 75 volunteers. At that time her focus shifted towards the development of camp and fundraising. For the past 5 years they have provided subsidized tuitions and scholarships to approximately 100 families each summer. The program has been filled to capacity with 250 total attendees (volunteers and campers) since 2014. Tricia recently retired from my position with TICS of GA in August of 2018.

 

Tricia is excited to be returning her focus to working with parents and families through a positive meeting experience in conjunction with the Tourette Association of America. Creating a supportive network has been a passion and goal of hers for many years now. Camp brought her together with many families who continue to search for support, guidance, and meaningful connections beyond the gates of camp. She is most excited to develop an effective, engaging, and enjoyable online program with the support of the Tourette Association of America.

Tricia is currently licensed as a Registered Nurse in Georgia and is now able to practice in several other states through a Nursing Compact Law recently adopted in Georgia. Her role as the facilitator for this group will be to help guide the conversation, as well as connect and coach other parents during the meetings.

Parent Support Group – TS and Explosive Behaviors/Rage – FULL

*This support group has reached its capacity. Thank you for your interest. Those interested in the next session will be added to the waitlist.*

1st Thursday of the month. This group runs from 7:00-8:30pm EST.

Audience: Parents of children/teens with TS or Tic Disorders who experience explosive outbursts.

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: October 1 – Topic: Understanding disinhibition and its impact on behaviors.
  • Session 2: November 5 – Topic: Related disorders which can increase explosive behaviors.
  • Session 3: December 3 – Topic: Important strategies and tips for de-escalating situations.
  • Session 4: January 7 – Topic:  Developing strategies with child, during calm moments, which may be helpful for both child and parent.
  • Session 5: February 4 – Topic: The importance of Functional Behavior Assessments & Positive Proactive Plans for school.
  • Session 6: March 4 – Topic: Understanding and importance of assessments/evaluations at school.

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.

Online Support Group for Young Adults

2nd Wednesday of the month. This group runs from 7:00-8:30pm EST.

Audience: This group is for young adults, ages 18-25, who have a diagnosis of Tourette Syndrome or a Tic Disorder.

  • Session 1: October 14 – Topic: Welcome
  • Session 2: November 11 – Topic: Core Values
  • Session 3: December 9 – Topic: Stress Management
  • Session 4: January 13 – Topic: Regulating Emotions
  • Session 5: February 10 – Topic: Dealing with Co-Conditions
  • Session 6: March 10 – Topic: Tourette Research
  • Session 7: April 14 – Topic: Accommodations
  • Session 8: May 12 – Topic: Conflict Resolution
  • Session 9: June 9 – Topic: Workplace Interactions
  • Session 10: July 14 – 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.

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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.