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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.
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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.
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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! 🙏
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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. LinkAbi-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!
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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) -
By Daniel Alvarez-Fischer
