Gilles is in the air

" ...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. María Belén is a member of the steering committee of Tics and Tourette Across the Globe (URL) and actively contributes to awareness, advocacy, and education at both national and international levels. Through her platform Voces del Tourette, she shares psychoeducational resources, promotes visibility, and amplifies the voices of individuals and families living with Tourette. She is deeply committed to supporting the Tourette community through education, collaboration, and compassionate outreach.  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. Belinda has lived with Tourette’s Syndrome all her life. She was officially diagnosed at the age of 5, in the UK, in the year 2000. She also has ADHD and suffers from anxiety. She has previously battled with depression. Belinda tries to support the Tourette’s community where she can, taking part in her local hospital’s neurological department’s research projects and generally talking about Tourette’s and what it is really like to live with it.  In 2018, she published an interview with BBC3’s MisFITS Like US’s Terrina Bibb on UK Tourette’s charity, Tourette’s Action’s blog. 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.

Key findings, limitations and clinical perspectives on the important phase III study of Ecopipam for TS; taking a closer look with Dr Don Gilbert.  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 explains its mechanism of action and reviews the preclinical evidence that first suggested its potential benefit for Tourette syndrome. The conversation covers the drug's initial exploration in other clinical applications, before pivoting to its development specifically for TS. The episode provides an in-depth look at three earlier clinical trials that demonstrated Ecopipam's benefit in individuals with TS, examining both their promising results and inherent limitations. Dr Gilbert then walks through the comprehensive methodology of the phase 3 study, explaining the rationale behind the chosen study design and the involvement of 99 sites worldwide that enrolled 216 subjects in the open-label phase. Key efficacy findings are discussed for both paediatric and adult populations, including specific reductions in YGTSS Total Tic Severity scores. The conversation addresses the critical safety profile, examining psychological, metabolic, and extrapyramidal side effects, with particular attention to concerns regarding suicidality signals observed in the trial data. He also shares insights on Ecopipam's effects on psychiatric comorbidities commonly associated with Tourette syndrome, acknowledges the study's limitations, and discusses available data from the extension phase. The episode concludes with perspectives on anticipated regulatory timelines in the United States and Europe, along with Dr Gilbert's thoughts on where Ecopipam might fit in the treatment algorithm and any additional considerations for clinicians and patients. 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 Gilbert DL, Budman CL, Singer HS, Kurlan R, Chipkin RE. A D1 Receptor Antagonist, Ecopipam, for treatment of tics in Tourette Syndrome. Clinical Neuropharmacology, 2014. 37:26-30. Gilbert DL, Murphy TK, Jankovic J, Budman CL, Black KJ, Kurlan RM, Coffman KA, McCracken JT, Juncos J, Grant JE, Chipkin RE. Ecopipam, a D1 receptor antagonist, for treatment of Tourette Syndrome in Children: A randomized, placebo-controlled crossover study. Movement Disorders 2018. 33: 1272-1280.  Chipkin RE, Gilbert DL, Mahableshwarkar A. Ecopipam: A D1 receptor antagonist for the treatment of Tourette syndrome. International Review of Movement Disorders. Elsevier, Inc. 2022. doi   Gilbert DL, Dubow JS, Cunniff TM, Wanaski SP, Atkinson SD, Mahableshwarkar AR. Ecopipam for Tourette Syndrome: A Randomized Trial. Pediatrics 2023. doi PMID: 36628546 Gilbert DL, Kim DJB, Miller MM, Atkinson SD, Karkanias GB, Munschauer FE, Wanaski SP, Cuniff TM. Safety and Effect of 12-month Ecopipam Treatment in Pediatric Patients with Tourette Syndrome. Movement Disorders Clinical Practice. 2025. doi   

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: the goal and the methods of the study as several premonitory urge-measuring scales have been identified, which one is the best to use? prevalence estimates of premonitory urge in individuals with tics have been found between 37% and 93%; which factors influence the presence of the urge? does the premonitory urge depend on the type, the location and the severity of the tics? were the tics or the urges more bothersome? based on several studies, it was mentioned that more severe urges are associated with greater disability; is this controlled with severity of tics and comorbidities? how is such a variability explained in the results of studies that explore the association between urge severity and tic suppression ability? how does the urge seem to impact cognition? which brain areas are activated during the urge and how was this found? which treatment(s) reduce the urge? what knowledge gaps have you identified for future studies? Thank you Jack and David for sharing your findings and expertise with us!  

Our guest today is Rena Zito, associate professor of sociology in the Department of Sociology and Anthropology at Elon University in North Carolina, U.S.A and a person with Tourette Syndrome. Her research focuses on social stigma, including how stigmatised populations form identities, preserve dignity, and combat social exclusion.   Drawing on interviews with 30 adults diagnosed with TS, she explores how this narrow stereotype circulates in media and everyday interactions, and how adults with TS push back against it, sometimes with unintended consequences for those whose tics confirm the stereotype.   Rena concludes that correcting myths about TS is vital, but it shouldn’t come at the expense of people with coprolalia. Advocacy groups, individuals with TS, and medical professionals can foster inclusion by acknowledging the full range of TS experiences and framing coprolalia as one of many possible tic expressions rather than treating it as an unfortunate exception.   Contact Rena Zito: [email protected]  Bio: https://www.elon.edu/u/news/author/rzito/ View her article: https://www.tandfonline.com/doi/full/10.1080/01639625.2025.2531145   

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.  Suggested article:  "The Impact of Montelukast Duration on the Risk of Neuropsychiatric Disorders in Children with Asthma: A Population-Based Cohort Study" Visit page

A long-awaited episode with Professor Stephen Jackson and Dr Barbara Morera from the University of Nottingham and Neurotherapeutics Ltd.  They have been developing "a safe and effective non-drug treatment that reduces tics and the urge to tic, through gentle stimulation of the median nerve in the wrist".  We are grateful to them for taking the time to answer very important questions that help us understand the effect of median nerve stimulation on tic suppression.  Please find below the questions addressed and the key points of our conversation.  Why is non-invasive stimulation of interest in the pathophysiological mechanism of tic generation? How did the idea of using peripheral stimulation in modulating cortical motor excitability in tics occur? When exploring the effect of median nerve stimulation on tic suppression in your study, what was your methodology (in terms of number of participants, inclusion criteria e.g. comorbidities, time and recurrence of stimulation, assessment of efficacy)? What did it show? Did the MNS lead to a statistically significant reduction of tics?   Is MNS supposed to work only during stimulation? You showed that rhythmic but not arrhythmic trains of MNS lead to entrainment of 12 Hz oscillations and are of interest in tic reduction, is that right? How would you interpret this result? In your work, tic intensity and tic frequency were studied. What scale did you use? Did you distinguish vocal tics and motor tics? Did the participants have particularly severe forms of TS? How did you demonstrate that these results are not only the effects of distraction? What is the effect of MNS of volitional movements and cognitive function? Who would benefit the most from MNS? / For what use in real life would MNS be useful? Both for children and adults?  What do people feel when receiving this stimulation? Is it painful, irritating, annoying, strange? Does MNS have a main effect or PU or tics? Are we able to know at this point Is there a study planned with a larger sample or another objective?  Is there another use of MNS in movement disorders? When do you think it will be available on the market? At what price? Stephen Jackson is Professor of Cognitive Neuroscience at the University of Nottingham and Director of the University’s Centre for Neuromodulation, Neurotechnology, and Neurotherapeutics. He is a co-founder of Neurotherapeutics Ltd, a university medical device spin-out established in 2021 to develop a wearable for of non-invasive brain stimulation (the Neupulse device) for the treatment of tic disorders. His current research focuses on developing non-invasive brain stimulation treatments for a range of brain disorders and mental health conditions. Dr Barbara Morera is a neuroscientist who has been working with Prof. Stephen Jackson on the development of a non-invasive treatment for Tourette Syndrome and Chronic Tic Disorder for the last 8 years. Co-founder of the company Neurotherapeutics, a spin out company from the University of Nottingham, founded with the aim to make this treatment available for those who would like to control their tics.   

Our guest for the 7th episode of "Gilles is in the air" is Dr Anna Castrioto from the Grenoble Alps University Hospital in France. View her research works.  We talk about hormonal changes and tics, contraception methods in association with anti-tic treatments, tic changes during pregnancy and post-partum, treatments that are not recommended during pregnancy and the ones that are harmless. We address the same questions in relation to breast-feeding, enquire about concerns for DBS in women with TS during pregnancy and the difficulties they encounter in coping with TS in their role as mothers.

For our 6th episode, Christelle Nilles interviews Lindsay Berg, a special guest, who is very knowledgeable about today's particularly important topic. Lindsay Berg is a Master’s student at the University of Calgary in the Clinical Psychology Program. Her current research focuses on care equity and on examining barriers and facilitators of medical and mental health care for trans and gender diverse youth. She previously worked in the Movement disorders clinic investigating functional tic-like behaviours.   (We apologise for the suboptimal audio quality at certain parts.)

For our 5th episode of "Gilles is in the air", we reach out to parents and teachers to hear about the challenges that they and their children are encountering within the school environment, and the solutions and mechanisms that help them in various situations. Christelle Nilles interviews Lucy Toghill, Education Manager at Tourettes Action UK, Jose Rosa and Phillip Schöne from Spain and New Zealand respectively and currently based in Valencia, and Christina Papakaliati, founder of the newly formed, Tourette Greece.  We are very grateful for their time and willingness to share their stories! Useful links by Tourettes Action UK:  Education link Information for Education Professionals link You may also view Christina Papakaliatis' video recording included in the "TS-underrepresented zones" session at our conference in Varese in June 2024.

For our 4th episode of "Gilles is in the air", Christelle Nilles talks to Professor David Mataix-Cols who works at the Department of Clinical Neuroscience at the Karolinska Institutet in Stockholm, as a Professor of Child and Adolescent Psychiatric Science.  We are delighted to hear about his very important article “Early-Life and Family Risk Factors for Tic Disorder Persistence into Adulthood”, published in Movement Disorders in 2023. 

Inspiring, honest and enlightening stories For our 3rd "Gilles is in the air episode", we welcome E.G. Gidner (USA), Devyn LaCroix (USA) and Paul Stevenson (UK). We discuss amongst other things about the chronology of their first tics, if/how bothersome they were, how they were perceived by their close ones, the diagnosis –the announcement and its effect, the term "Tourette", available resources and the current landscape; acceptance and understanding. To find out more about our guests: E.G Gidner, X, LinkedIn, Facebook Devyn LaCroix Paul Stevenson, X, LinkedIn, Facebook E.G., Devyn, Paul, thank you for sharing your stories with us! 🙏

For our second episode of "Gilles is in the air", Christelle Nilles co-hosts the interview with Dr Natalia Szejko and together they ask important questions on cannabis-based medicines as a treatment strategy for improving tics. Our guest today, is Professor Kirsten Müller-Vahl from the Hannover Medical School, specialised in neurology and adult psychiatry. Over the past 30 years, she has investigated Tourette syndrome in more than 3,000 patients. She is the President of the International Alliance for Cannabinoid Medicines (IACM), and past Chair of the ESSTS.   References, studies and papers cited: CANNA-TICS: Efficacy and safety of oral treatment with nabiximols in adults with chronic tic disorders – Results of a prospective, multicenter, randomized, double-blind, placebo controlled, phase IIIb superiority study. Link Abi-Jaoude E, Bhikram T, Parveen F, Levenbach J, Lafreniere-Roula M, Sandor P. A Double-Blind, Randomized, Controlled Crossover Trial of Cannabis in Adults with Tourette Syndrome. Cannabis Cannabinoid Res. 2023 Oct;8(5):835-845. doi: 10.1089/can.2022.0091. Epub 2022 Aug 30. PMID: 36040329. Mosley PE, Webb L, Suraev A, Hingston L, Turnbull T, Foster K, Ballard E, Gomes L, Mohan A, Sachdev PS, Kevin R, Gordon R, Benson M, McGregor IS. Tetrahydrocannabinol and Cannabidiol in Tourette Syndrome. NEJM Evid. 2023 Sep;2(9):EVIDoa2300012. doi: 10.1056/EVIDoa2300012. Epub 2023 Jun 7. PMID: 38320199. Müller-Vahl KR, Pisarenko A, Ringlstetter R, Cimpianu CL, Fremer C, Weidinger E, Jenz EB, Musil R, Brunnauer A, Großhennig A. The Effect of Nabiximols on Driving Ability in Adults with Chronic Tic Disorders: Results of a Substudy Analysis of the Double-Blind, Randomized, Placebo-Controlled CANNA-TICS Trial. Cannabis Cannabinoid Res. 2024 Jan 23. doi: 10.1089/can.2023.0114. Epub ahead of print. PMID: 38265476. Anis S, Zalomek C, Korczyn AD, Lassman S, Rosenberg A, Gurevich T. Licensed Medical Cannabis Use in Gilles de la Tourette Syndrome: A Retrospective Long-term Follow-Up. Cannabis Cannabinoid Res. 2023 May 12. doi: 10.1089/can.2022.0281. Epub ahead of print. PMID: 37172308.

For 2024 we introduce "Gilles is in the air", our new podcast series hosted by Christelle Nilles. We discuss the latest findings on Tourette syndrome, share stories, and create connections. Every month, (we are only warming up!), we will talk about tics, associated comorbidities and lived experiences; our episodes are aimed at researchers, clinicians, patients and their families. We shall interview authors whose papers have caught our attention, discuss hot topics that may seem controversial, share different ways of educating the community on TS and hopefully, we will all learn something about Tourette that we had yet to discover. So please, tune in, turn up the volume, and keep on listening… 🎧 And if you find the episode interesting, hit subscribe and please share!

For the first episode of "Gilles is in the air", Christelle Nilles talks to Dr Andreas Hartmann, a movement disorder neurologist at the Pitié Salpêtrière Hospital in Paris, France and coordinator of the French Centre of Excellence (centre de référence) for Tourette syndrome. References, studies and papers cited: Fat MJ, Sell E, Barrowman N, Doja A. Public perception of Tourette syndrome on YouTube. J Child Neurol. 2012 Aug;27(8):1011-6. doi: 10.1177/0883073811432294. PMID: 22821136. Müller-Vahl KR, Sambrani T, Jakubovski E. Tic disorders revisited: introduction of the term "tic spectrum disorders". Eur Child Adolesc Psychiatry. 2019 Aug;28(8):1129-1135. doi: 10.1007/s00787-018-01272-7. Epub 2019 Jan 19. PMID: 30661132; PMCID: PMC6675752. Prevalence of tic disorders: a systematic review and meta-analysis: Knight T, Steeves T, Day L, et al. (2012). Prevalence of Tic Disorders: A Systematic Review and Meta-Analysis. Pediatric Neurology, 47(2), 77–90. DOI  Review of prevalence of coprolalia in Tourette syndrome (TS) : Robertson MM, Eapen V, Singer HS, et al. Gilles de la Tourette syndrome. Nat Rev Dis Primers 2017;3(1):16097. Representation of coprolalia in the media: Calder-Sprackman, S., Sutherland, S., & Doja, A. (2014). The Portrayal of Tourette Syndrome in Film and Television. Canadian Journal of Neurological Sciences / Journal Canadien Des Sciences Neurologiques, 41(02), 226–232. doi:10.1017/s0317167100016620  https://tourette.org/resource/understanding-coprolalia/ https://tourette.org/momdad-kid-tourettes/  "Is it time to rename Tourette"? Controversy session followed by a poll at 12th European Conference on Tourette Syndrome & Tic Disorders in Hannover, Germany. (2019)  

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