TIC-CON 2023

Explore the session recordings from TIC-CON 2023, our virtual 2-day event that was held on May 19-20, 2023. Dive into a diverse range of topics discussed by experts, advocates, and individuals with Tourette Syndrome and Tic Disorders. Click on the ‘+’ icon below to expand and access each video, description, and presentation slides. Please be aware that sessions involving youth participants at TIC-CON were not recorded to prioritize their privacy and confidentiality. 

Research Symposium - Day 1

Presenter: Elia Abi-Jaoude, MSc, MD, PhD, FRCPC – University of Toronto

There has been much interest in cannabis for Tourette syndrome (TS). However, with the myriad of products available, clinicians are often uncertain about how to guide their patients around this issue. The goal of this session is to review the evidence for cannabinoids for the management of tics, including its limits, and to provide practical guidance for clinicians. This will include presentation of results from a recent randomized controlled trial comparing the efficacy and tolerability of three medical cannabis products with different levels of THC and CBD in reducing tics in adults with TS.

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Presenters:
  • Jennifer Vermilion, MD – University of Rochester (Center of Excellence)
  • Yelizaveta Sapozhnikov – University of Rochester (Center of Excellence)

In this presentation, we will discuss what is known about anxiety in Tourette syndrome, including how many people are affected by anxiety, how anxiety may present, and how anxiety may impair individuals with tics. We will also describe the results of our team’s current, ongoing research projects related to the functional impact of anxiety on Tourette syndrome and the use of treatments (both medications and therapies) to treat anxiety in Tourette syndrome. Finally, we will review what is known about the relationship between anxiety and tics and discuss ways in which management of anxiety may impact tics.

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Presenter: David Issacs, MD, MPH – Vanderbilt University (Center of Excellence)

Environmental stressors have been postulated to impact the course of Tourette syndrome (TS), given their known influence on brain developmentand adult mental and physical health. In children with TS, environmental stressors predict tic and psychiatric symptom severity at two-year follow-up. In adults with TS, childhood adversity is associated with worst-ever tic severity. However, the broader, longitudinal impact of environmental stressors on adults with TS remains uncertain. This lecture will review 1) the background evidence supporting the hypothesis that environmental stressors influence the course of TS into adulthood and 2) preliminary baseline results from a longitudinal study testing this hypothesis.

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Presenter: Sharon Anavi-Goffer, PhD – University of Aberdeen, Aberdeen, UK The effects of HU-308, a selective cannabinoid CB2 receptor agonist, on motor-like tics were studied in the presence or absence of 2,5-dimethoxy-4-iodoamphetamine (DOI), a highly potent agonist of the serotonin 5-HT2A/2C receptors. The effects of HU-308 on head twitch response (HTR; central motor-like tic), ear scratch response (ESR; urge-like response) and grooming behavior (caudally located peripheral motor-like tic) were compared between wildtype and CB2 receptor knockout (CB2-/-) mice. The frequency of DOI-induced repetitive behaviors was higher in CB2-/- than wildtype mice. HU-308 increased DOI-induced ESR and grooming behavior in adult CB2-/- mice. In healthy juvenile males, in the absence of DOI, HU-308 significantly increased HTR. But in the presence of DOI (model of motor tics), HU-308 inhibited HTR and ESR. In left prefrontal cortex of juvenile male mice, DOI increased transcript expression of the CB2 receptor, but reduced fatty acid amide hydrolase (FAAH) and α/β-hydrolase domain-containing 6 (ABHD6), which hydrolyzes the endogenous cannabinoid 2-arachidonoylglycerol (2-AG), expression levels. The intensity of the effects of HU-308 in females was lower than in males: (1) HU-308 had a lower or no effect on HTR in juvenile females; (2) HU-308 significantly decreased basal grooming behavior in juvenile females but not in males; (3) HU-308 (0.2 mg/kg) significantly inhibited DOI-induced HTR and grooming behavior in females but not in males.

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Presenters:

  • Natalia Szejko, MD, PhD, ScD – University of Calgary
  • Christelle Nilles, MD – University of Calgary

A deeper understanding of healthcare determinants in underrepresented groups of patients with tic disorders such as females, sexual and ethnical minorities may provide useful guidance to clinical assessment, management, prognosis and enable individualization of treatment. The purpose of our panel is present an overview of studies reporting about sex differences in tic disorders. We will also complement this overview with presentation of the original findings derived from the analysis conducted in Paris and Calgary Tic Registry. We will present results of the preliminary analysis about racial and non-racial disparities in All of Us Research Study.

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Presenter: Jeremy Rosenbaum, Young Leader Heading to Medical School Investigating the phenomena of tic attacks in Tourette Syndrome, this research project builds upon existing literature to create a more generalizable and practical framework. With an overarching goal of analyzing the impacts of common comorbidities, this project suggests a redefined diagnostic criteria for tic attacks, defines a proposed tic-related adaptive temporary disability criteria, and suggests mechanisms for positive feedback loops that occur between tics and comorbidities of TS.

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Presenters:
  • Yocheved Loewenstren, MSc – Bar-Ilan University, Israel
  • Izhar Bar-Gad, PhD – Bar-Ilan University, Israel
  • Noa Benaroya-Milshtein, MD, PhD – Bar-Ilan University, Israel
Developing a new tool for measuring tic expression in patients with Tourette Syndrome and other chronic tic disorders. Our custom-developed smartphone application allows for automatic, objective, quantitative assessments of tic expression over prolonged periods of time in natural behavioral settings. Videos of patients’ facial tics are recorded by the smartphone’s frontal camera and then analyzed using advanced deep neural network technology for automatic tic detection. This tool has the potential to revolutionize the way tic disorders are diagnosed and treated, providing clinicians with a powerful tool for monitoring their patients’ progress and evaluating the efficacy of different treatments.
Presenter: Simon Morand-Beaulieu, PhD – McGill University, Montreal, CA Tourette syndrome (TS) and attention deficit hyperactivity disorder (ADHD) frequently co-occur. However, it remains unclear how the neurobiological underpinnings of TS and ADHD may be similar or different. By assessing functional connectivity in 137 children with either TS, ADHD, TS+ADHD, or who are typically developing controls, we wish to better understand the co-occurrence of TS and ADHD and its neurobiological underpinnings. This study will also assess how patterns of functional connectivity are associated with different measures of emotional and behavioral functioning, as well as with the severity of inattentive and hyperactive symptoms.

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Presenters:
  • Jessica Frey, MD – West Virginia University
  • Irene Malaty, MD – University of Florida (Center of Excellence)
  • Aparna Wagle Shukla, MD – University of Florida (Center of Excellence)
Repetitive transcranial magnetic stimulation (rTMS) is a painless and non-invasive form of neuromodulation that has been shown to reduce tics in individuals, and may lead to even further reduction when combined with Comprehensive Intervention for Tics (CBIT). This presentation focuses on a novel treatment for tics using an accelerated rTMS protocol in combination with CBIT. Participants completed an accelerated rTMS protocol over 4 consecutive days followed by virtual CBIT sessions. We will summarize the results of a recent open-label study and discuss the plan for an upcoming randomized, controlled trial that will expand on the results of the open-label study.

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Presenter: Marc Graff, PhD – Touro University What are the cognitive tasks and social situations most likely to be challenging for individuals with Tourette Syndrome? This presentation reports on the findings of a broad, systematic review of this topic, focusing on the areas of executive functionand social cognition. It will include a short elaboration of how the cognitive and behavioral characteristics discussed are related to distinct neurological patterns associated with Tourette Syndrome. Recommended strategies for managing these challenging tasks and situations will be included in the discussion as well.

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Presenter: Marco Bortolato, MD, PhD – University of Utah This presentation will be an overview of potential new pharmacological interventions to reduce tic severity, as supported by animal models of Tourette syndrome. Novel results on emerging leads will be also presented, based on recent experimental research.

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Presenter: Stephen Jackson, PhD – The University of Nottingham Currently, effective treatment for tic disorders is an area of considerable unmet clinical need. Learn about an evaluation of the efficacy of a home-administered neuromodulation treatment for tics involving the delivery of rhythmic pulse trains of median nerve stimulation (MNS) delivered via a wearable ‘watch-like’ device worn at the wrist.

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Youth, Family, and Education - Day 2

Adults Track:

Presenter: Michael Leopold, Human Resources Consultant This is a highly practical, Q&A driven workshop designed for job seekers. We will discuss strategies and tools to build a more neurodiverse workforce – from the perspectives of the neurodivergent job seeker and the employer. Job seekers will learn how to find jobs matching their interests, stand out to recruiters, handle sensitivities around disclosure, and navigate executive dysfunction and anxiety.

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Presenter: Kristi Pierce, MSW Are you an adult with Tourette Syndrome? Are you confused, frustrated, or feeling like an orphan in this population? Are you angry that you still have a disorder that you were told you’d outgrow long ago? If so, you are far from alone. In fact, you are among many thousands that share your story every day. Let’s help each other enjoy life to the fullest. Come participate in a special session just for you. Leave validated, uplifted, and full of take-away tips for calming & soothing self-care. After all, we belong and we are worth it!
Presenter: Michael Chichioco “I Have Tourette Syndrome” — This is such a simple phrase, yet so complicated all at once. It’s likely that many of us consider disclosing TS to someone new almost every day, which can be exhausting, difficult and situation dependent. I hope to share my experience with disclosing TS in varying situations whether that be school, professional workplaces, friends, romantic relationships, in public, etc. I hope to validate any feelings you may have about disclosure and together I hope each listener feels more prepared to handle situations in which they are considering whether or not to disclose they have Tourette Syndrome.

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Presenter: Dr. Kate Mielitz, PhD, AFC(R) Personal finance isn’t always a cakewalk for the neurotypical and there are additional challenges associated with making your money work for you when you have a neurodevelopmental disability. Get tips and tricks on how to strengthen your financial foundation.

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Parents/Educators Track:

Presenters:
  • Kathy Giordano, TAA’s prior Education Specialist
  • Nicky Bohm, Behavioral Specialist
  • Jan Rowe, MD, OT – Univeresity of Alabama (Center of Excellence)
Participants will have an understanding of the basic elements and importance of a Functional Behavior Assessment (FBA) for students with Tic Disorders. Hands on activities will demonstrate the importance of using the data from a Tourette based FBA when developing a Positive Intervention Plan (PBIP). PBIP’s are effective and proactive while increasing opportunities for inclusion. Plans which are reactive and punitive, too often result in removal from general education. Lastly, participants will walk away with an understanding and ability to explain to others disinhibition which is often misunderstood and a major reason for inappropriate punishment and suspensions.

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Presenter: Kathleen Downing, Special Education teacher & volunteer for the Michigan Chapter of the TAA In Developing Systems to Tackle Executive Function Challenges, real life stories of executive function missteps and successes illustrate the importance of easy to understand systems. In this session you will learn how to estimate your child’s executive function level (hint: it’s not their chronological age), how to set up systems and environments for success, and strategies for buy-in and motivation.

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Presenter: Jan Stewart, Advocate and Author In this interactive session, mental health advocate Jan Stewart will inspire parents of children with Tourette Syndrome to persevere and have hope. She will detail the never-ending roller coaster journey involved in raising her children, both of whom have Tourette Syndrome and co-occurring autism, Obsessive Compulsive Disorder, anxiety, ADHD and learning disabilities. She will share key insights from her book Hold on Tight: A Parent’s Journey Raising Children with Mental Illness to empower parents to optimize their lives. Families, friends, educators, and medical providers will also benefit from understanding the parental perspective and how they can better work together.

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Presenter: Charles Galyon, PhD – Knoxville Behavioral & Mental Health Services Raising and helping a child who is experiencing tics can be confusing and stressful for parents partly because of concern for their child and partly because of their own agitation due to the repetitive nature of tics. In this presentation parents will learn about how to practice accepting their own distress and respond to it with compassion so they can be more fully present and supportive of their child as they learn how to engage fully in their own lives.

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Medical Track:

Presenters:
  • Kinga Tomczak, MD, PhD – Boston Children’s Hospital
  • Tamar Katz, MD, PhD – Boston Children’s Hospital
Tourettic OCD (TOCD) is a disorder that shares some characteristics of both OCD and classic tic disorders, though also presents with distinct phenomenology that is often unfamiliar even to experienced clinicians. The specific behaviors seen in TOCD are typically complex tic-like behaviors although with a compulsive and partially anxious nature reminiscent of OCD. This presentation will discuss clinical, genetic, environmental, neurodevelopmental, and neurocircuit-based research to better characterize our current understanding of TOCD. At the end of this talk participants will be able to describe the unique characteristics of TOCD, the genetics and neurocircuitry underlying it, and multi-modal treatment paradigms.

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Presenters:
  • John Piacentini, PhD – UCLA Department of Psychiatry and Biobehavioral Sciences
  • Dana Feldman-Sadeh, PhD – Schneider Children’s Medical Center’s Psychological Medicine
  • Noa Benaroya-Milshtein, MD, PhD – Schneider Children’s Medical Center, Psychiatric Department
Parents of children and adolescents with Chronic Tic Disorders (CTD) face increased caregiver burden and parenting stress. Additionally, parents of children with tics often lack important knowledge about CTD. COVID pandemic has added burden and stress to parents and patients while waiting lists for mental health interventions have gotten longer. In this workshop, Prof John Piacentini, Dr Benaroya-Milshtein, and Dr Feldman Sadeh will review the literature on parents’ symptoms and wellbeing and discuss intervention options.
Presenters:
  • Jan Rowe, MD, OT – University of Alabama (Center of Excellence)
  • Heather Simpson, OT – University of Florida Health (Center of Excellence)
Occupational therapy is a client-centered allied health profession that is concerned with promoting health and well-being through daily activities. Occupational therapists (OTs) are located in various settings around the country, including schools, outpatient clinics and hospitals. Unfortunately, not all OTs understand the complex needs of children and adults living with tics, and therefore are underutilized healthcare providers. In this presentation, two experienced OTs will introduce how occupational therapists can effectively provide evidenced-based assessment and interventions for people living with tics.

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Presenter: Judith Newman, PhD – Penn State University While little is specifically known about children’s understanding of the causes of neurobehavioral disorders such as Tourette Syndrome, this dynamic overview of global research on children’s concepts of illness may help us to formulate“developmentally-appropriate” explanations of tic disorders for diagnosed children,their siblings, and their peers. If we can scaffold interventions (even children’s storybooks) to increase children’s understanding of the causes of TS, the diagnosed child may be more amenable to treatment, able to educate others and/or better advocate for themselves. And informed siblings and peers may be more positive in their attitudes and interactions with the TS child.

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General Track:

Presenters:
  • Joseph Sexton, TAA Rising Leader Alumni
  • Joseph McGuire, PhD – Johns Hopkins University School of Medicine
This presentation brings together Joseph Sexton, a young scholar-activist involved in the Tourette community, and Dr. Joseph McGuire, a clinical psychologist and expert on Tourette’s Disorders, for a conversation on the divide between “Tourettic” tics (those associated with Tourette Syndrome [TS]) and “functional” tics (those associated with functional neurological disorder). Through qualitative evidence drawn from Joseph’s own life as well as Dr. McGuire’s extensive clinical experience, the speakers discuss the overlap and distinctions present in the Tourettic-functional tic dichotomy. This presentation aims to provoke thoughtful discourse among clinicians, patients, parents, and educators regarding the challenges of binary classification approaches.

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Presenter: Kathleen Ramsey, PhD – Children’s Hospital of Philadelphia Many youth with tic disorders experience tic-related pain or discomfort, which may be related to the tics themselves or the suppression of them. Dealing with pain can negatively impact youths’ psychological wellbeing and participation in daily activities. During this interactive presentation, Dr. Kathleen Ramsey will engage families in discussion about tic-related pain and provide strategies to manage pain and discomfort.

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Presenter: Wendy Wegman, Program Lead for Youth, Young Adult & School Education – TAA This presentation provides an overview of Tourette Syndrome & other tic disorders. Attendees will learn about what Tourette Syndrome, including facts, types of tics, and conditions that can co-occur with TS. Attendees will walk away with a better understanding of TS and tics as well as information on resources available at the TAA.
Presenter: Suzy Eppling, OT – CBIT Therapist The presentation Pick, Pull, Scratch, Bite provides an introduction to Body-Focused Repetitive Behaviors (BFRB) which are commonly mistaken for tics. BFRBs are excessive grooming habits such as hair pulling, nail biting, or scab picking that can lead to great physical and emotional harm. Participants will gain a basic understanding of CBIT and the ComB model and will learn how they can be successfully used together for treatment. The bulk of the presentation will involve a show and tell of numerous low-cost household items that can be used to inhibit unwanted behaviors.
Presenters:
  • Mindy Meyer, APRN-FPA, CPNP-PC, PMHS, CBIT- PlumTree Psychology
  • Dr. Ann Weller, PsyD – PlumTree Psychology
Environment influences outcomes in the treatment of Tourette’s and other Tic Disorders. This presentation will inform participants on the benefits of having a service/therapy dog. It will also provide tools and guidelines that help patients learn components of behavioral therapy for tics (CBIT) that translate into everyday living. CBIT is the number one treatment recommendation of the American Academy of Neurology, not all CBIT is the same. This presentation will provide best practices for successfully learning CBIT skills and taking them outside the providers office. Pet therapy and a nontraditional clinic setting are two ways to improve tic therapy outcomes and decrease tic severity.
Presenter: Kenneth Phelps, PhD, LMFT – Prisma Health & University of South Carolina “I’ll get around to that tomorrow. I think I’ll do this first. It can wait.” Who among us has not said these words? Whether the task is homework, chores, or a work responsibility, we often avoid things that feel aversive and pursue activities that seem more appetitive in the moment. Many of us regularly put things off even in the face of significant life consequences. In this talk, the presenter will unpack the definition of procrastination. Participants will better understand how procrastination manifests in those with executive functioning or emotional regulation difficulties. Strategies for overcoming procrastination will be offered.

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