Gilles is in the air

From TS diagnosis to disclosure: how do you share your story? Part II

" ...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

From TS diagnosis to disclosure: how do you share your story? Part I

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 | info@vocesdeltourette.com
 
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.
 

Eye blinking abnormalities in Tourette syndrome: Blink more or blink differently?

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.
 

Providing support for families and healthcare professionals: the associations' role and outreach

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.

Results from phase III study of Ecopipam for Tourette Syndrome

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