Gilles is in the air

In this episode of “Gilles in the Air,” our host Christelle Nilles interviews Dr Andrea E. Cavanna about his systematic review on sleep disorders in tic disorders, published in Journal of Personalized Medicine. 

Andrea E. Cavanna, MD PhD FRCP FANPA SFHEA, is Consultant in Behavioural Neurology at the Department of Neuropsychiatry, National Centre for Mental Health, and Associate Professor in Neuropsychiatry at University of Birmingham (United Kingdom) and University of Milano-Bicocca, Milan (Italy). He is Lead Consultant for the specialist Tourette syndrome clinic at the Department of Neuropsychiatry, Birmingham, and Director of the MSc in Clinical Neuropsychiatry at the University of Birmingham.

" ...and it was so weird that something I was trying to erase all my life, I had to suddenly defend it" 

In this compelling second part, Salomé, an artist from France, shares her profound experiences of living with the condition and how it has shaped her life, relationships, and self-awareness. Salomé candidly discusses the challenges and growth that come with embracing her diagnosis, providing insight into the nuanced realities of managing Tourette Syndrome—an aspect that's often misunderstood by society at large.

In our conversation with Salomé, we explore the intersections of living with Tourette Syndrome and maintaining a career as an artist, offering a deeply personal perspective on navigating societal expectations and personal identity. She opens up about the misconceptions surrounding Tourette Syndrome, particularly the misbelief that it's primarily characterized by the utterance of "rude words" as she puts it. Instead, she offers a revealing look at the variety of her symptoms, vocal tics and hyper-focus, and how these influence her artistic practice.

We also discuss the role that family plays in forging an understanding of the condition, and the unique challenges of conveying the reality of living with Tourette to romantic partners and colleagues. Dive into this episode for an intimate look at resilience and authenticity in the face of adversity.

Thank you Salomé for your engaging narrative! 

Website

In the latest episode of "Gilles is in the Air," we delve into the nuanced experiences of individuals living with Tourette Syndrome.

This episode, the first of a two-part series, welcomes Belinda from the UK and France, and Belén from Argentina who lives is Spain.

Through candid conversations, our guests share their personal journeys with Tourette Syndrome, discussing their initial diagnoses, the social challenges they've encountered, and how they've navigated sharing their experiences with others. 

María Belén Prieto is an Argentine psychologist living in Spain, specialised in Tourette syndrome and its common comorbidities, including ADHD. As an adult with Tourette and ADHD herself, she brings both professional expertise and lived experience to her work, fostering understanding, empathy, and empowerment within the community. She is a proud mother of twins and a passionate traveler, values that deeply shape her perspective on resilience and connection.

Website | [email protected]

Belinda Johnston grew up in the West Midlands of the United Kingdom. A 2017 Joint Honours French and Italian graduate of the University of Leeds, UK, she now works as an Event Coordinator in Paris, France, where she has lived since 2018. In her spare time, she enjoys running, yoga, cinema, singing and is an active member of the local Church of England Christian community.

You can read it here.

For this episode we sit down with Dr Julius Verrel and Dr Alexander Münchau to delve into their recent publication (Parkinsonism and Related Disorders Journal) on eye blinking abnormalities in Tourette Syndrome. They offer a deep dive into the intricacies of eye blinking patterns, shedding light on the distinctions between normal blinking, blink tics, and potential pathological blinks.

We talk about the historical and recent studies comparing blink rates in individuals with Tourette Syndrome to healthy controls, and the challenges in distinguishing between typical and atypical blinks.

Dr Verrel highlights the study's focus on understanding the characteristics of blink tics, aiming to differentiate them from physiological blinks. Through meticulous analysis, the researchers employed manual and automated methods to observe blink patterns, considering features like duration, amplitude, and temporal distance. This examination aimed to uncover potential markers that signify tics, contributing to a better understanding of Tourette Syndrome. 

Regarding the innovative use of high-resolution video recordings to dissect blink features with greater accuracy, Dr Münchau notes that ongoing collaborations with machine learning experts are set to enhance the precision of identifying atypical blinks. This technological advancement promises more refined diagnostic and research techniques, opening paths to potentially utilising blinking abnormalities as biomarkers for Tourette Syndrome.

Alexander Münchau studied medicine in Hamburg and Berlin, Germany. He spent 3 years at the Institute of Neurology, Queen Square in London. From 2001 to 2013 he worked in the Neurology Department of Hamburg University Hospital where he became Consultant in 2003. In 2013, he became head of the newly founded interdisciplinary Department of Paediatric and Adult Movement Disorders and Neuropsychiatry at the Institute of Neurogenetics and speaker of the Center for Rare Diseases at the University of Lübeck; since 2020, he is Director of the Institute of Systems Motor Science at the University of Lübeck.

Julius Verrel studied mathematics and cognitive neuroscience and completed a PhD in experimental psychology. He worked for several years at the Max-Planck-Institute for Human Development in Berlin. He has been working as a research scientist at the Institute of Systems Motor Science at the University of Lübeck since 2017.

For our last episode of the year, we had the pleasure of speaking with Julian Fletcher, the programme coordinator of the Tourette OCD Alberta Network in Canada. 

This insightful conversation delves into how associations can provide indispensable support for families and healthcare professionals dealing with Tourette Syndrome and OCD.

Throughout the episode, Julian shares the multifaceted approach his organisation takes to promote understanding, support, and community involvement across Canada.

His role at the Tourette OCD Alberta Network is comprehensive, involving everything from organising educational webinars to offering direct psychoeducation for newly diagnosed families. The network addresses the needs of diverse audiences, including parents, families, healthcare professionals, and educators, by providing webinars that cover topics like understanding Tourette Syndrome and OCD, behavioural interventions, and youth depression.

Julian emphasises the importance of making these webinars engaging and tailored to the specific concerns of each audience group.

A significant part of the network's mission is educational outreach in schools and communities, where Julian employs his background in teaching to create interactive presentations. These sessions are designed to foster empathy and understanding among students and staff, often culminating in impactful empathy activities that resonate deeply with participants.

He shares how these presentations not only improve awareness but also bring about positive changes in school environments and beyond, leading to greater acceptance and support for children with Tourette Syndrome. 

Through collaboration with Tourette Canada, the network extends its reach nationwide, offering care navigation and resources to families seeking support. Julian discusses how the partnership enhances the network's ability to connect parents with healthcare providers, while also facilitating peer support events that strengthen community bonds. Despite the challenges of reaching widespread audiences, the network continues to host successful events that bring families together, providing them with valuable opportunities to share experiences and gain insights from experts.

For our November episode, and following his talk at the Athens 2025 Conference, we speak with Dr Gilbert about Ecopipam, a promising new treatment for Tourette syndrome that has recently completed phase 3 clinical trial.

The discussion explores the need for better therapeutic options in the current treatment landscape of Tourette syndrome and traces Ecopipam's journey from early animal studies through its clinical development programme.

Dr Gilbert is Professor of Neurology at Cincinnati Children’s Hospital Medical Center, where he established the Movement Disorders and Tourette Clinics in 1998 and conducts translational research and clinical trials.  

Key references

For our latest "Gilles is in the air" episode, we remain...across the pond and get the chance to hear more about premonitory urge, the sensory phenomenon described and characterised in numerous studies and publications for more than 30 years.

Our guests today have conducted a scoping review of premonitory urge in primary tic disorders to identify and address limitations and knowledge gaps. 

"Knowledge of the clinical characteristics, measurement, and neural mechanisms of premonitory urge has advanced considerably in recent years, but important knowledge gaps remain in each of these domains. Addressing these knowledge gaps will be key to developing effective interventions for premonitory urge." 

Jack Wohlgemuth works as a clinical research coordinator at Mount Sinai Hospital in New York City, where he is focused on research related to Tourette syndrome and other neurological movement disorders. He is interested in how the brains of individuals with tic disorders differ in their processing of signals from within the body, and how these differences are related to the uncomfortable sensory phenomena that are often experienced prior to tics (“premonitory urges”). Jack received his BA from Vanderbilt University. 

Bio page: https://labs.icahn.mssm.edu/waterslab/team/

Email: [email protected] 

David Isaacs, MD, MPH is a movement disorders neurologist and co-director of the Vanderbilt Center for Tourette Syndrome and Other Tic Disorders, a Tourette Association of America Center of Excellence.

He provides clinical care to children, adolescents, and adults with tic disorders. His research examines the clinical impact and neurophysiologic correlates of non-motor features of tic disorders. 

Bio page: https://www.vumc.org/neurology/person/david-isaacs-md

Email: [email protected]

Some of the key points we discuss:

Thank you Jack and David for sharing your findings and expertise with us!

Our guest today (the episode was recorded in late April 2025) is Dr Noa Benaroya Milstein, Head of the Child Psychiatry Division Schneider's Children Medical Centre of Israel, where she also serves as Head of the Tourette Clinic. She is a Senior Lecturer at the Tel Aviv University Faculty of Medicine and actively involved in local and multi-centre studies specialised in Tourette syndrome and associated disorders. 

We talk about first-line pharmacological treatments, co-occurring condition-treatment-prioritisation cases, assessing tic-related impairment, botulinum toxin injections, DBS, promising molecules, the effects of pregnancy and postpartum period on tics and the current landscape and available treatments in Israel.

We are pleased to welcome today Tamara Pringsheim, who is a Professor with the Department of Clinical Neurosciences, Psychiatry, Paediatrics and Community Health Sciences at the University of Calgary. She also works as an evidence-based medicine methodologist for the American Academy of Neurology.  

Tamara is the president of the Tourette OCD Alberta Network, a nonprofit organisation that supports people living with Tourette syndrome and Obsessive-Compulsive Disorder in Alberta, and provides education and training on these disorders to healthcare providers. 

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