Tourette Syndrome: A Global Perspective
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Vice-President of Tics and Tourette Across the Globe (TTAG)
Rosita has over 20 years of commercial experience in marketing, engagement, development, management, communication, and start-ups. She has held leadership positions in both companies and not-for-profit organizations, including the Tourette Syndrome Association of Australia (TSAA). She holds a Bachelor's degree in Professional Marketing and is a Certified Professional in Digital Marketing and Fundraising. Rosita is particularly interested in disability and mental health issues and is dedicated to making a difference in these areas.
Her passion for advocating for Tourette Syndrome (TS) emerged 18 years ago when her son was diagnosed with TS and other coexisting neurological disorders. She has volunteered as a TSAA Support Group Leader and was for over seven years a TSAA Phone Volunteer. Her time working and volunteering at TSAA, the stories shared by people impacted by TS and coexisting disorders plus her personal experiences with TS have provided Rosita with insights into the complexity of TS and other neurological conditions.
Volunteering: Rosita the Vice-President and one of the founding members of "Tics and Tourette across the Globe (TTAG)," an international umbrella organisation for TS. She also serves as the Australian Ambassador for One Neurology. Working with the international TTAG team, she aims to raise awareness, challenge negative perceptions, create opportunities, and empower individuals with TS to lead fulfilling lives. She strongly believes in collaboration and is enthusiastic about working with international teams to prioritise TS on a global health scale.
Employment: She currently holds the position of Executive Officer for the Australian Clinical Psychology Association (ACPA) and consults as Director of Rosita Sunna Consulting not-for-profit organisations.
Telethon Kids: Tourette Syndrome Impact Study
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Dr Melissa Licari Dr, BSc PhD W Aust, Senior Research Fellow
Dr Melissa Licari is a Senior Research Fellow in the Child Disability team at Telethon Kids Institute who specialises neurodevelopmental conditions impacting on motor function. She is passionate about making a difference to the lives of people with disability and committed to work that will improve support and access to quality services. In 2020 she led the delivery of Australia’s first national survey in Developmental Coordination Disorder (DCD), an under-recognised and under-supported neurodevelopmental motor disorder affecting 1 in 20 children. The project (called Impact for DCD) brought together the voices of consumers, families, researchers, service providers and clinicians, and highlighted the significant disadvantage and neglect experienced by people with DCD and their families. She has led the co-development of national action plans, community resources and government submissions. Her work has attracted national media attention and interest worldwide and Impact for DCD has been rolled out in eight other countries around the world, growing to become an international advocacy effort.Following her daughter’s diagnosis of Tourette syndrome in 2022, Melissa soon realised that the Tourette’s community were also experiencing significant disadvantage and neglect. Compelled to help improve the lives of people with Tourette’s syndrome and tic related conditions, Melissa will co-lead Australia’s first national survey (Impact for Tourette’s) in 2023 together with TSAA and leading specialists and researchers from around Australia. Co-designed with the Tourette’s community, the survey will collect large-scale evidence of challenges and unmet needs, evidence that will be used to raise awareness and drive systemic change.
Medicinal Cannabis – Wesley Research Institute
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Dr Philip Mosley FRANZCP MA (Oxon.) BMBCh (Oxon.) Psychiatrist
Dr Philip Mosley studied at the University of Oxford and obtained a masters degree in physiological sciences and a degree in medicine. He was also captain of the university boxing team and was awarded two full 'Blues'. He worked as a junior doctor in Manchester before moving to Australia to complete his specialist training in psychiatry.
Dr Mosley is a Fellow of the Royal Australian and New Zealand College of Psychiatry (RANZCP) and has completed an advanced certificate in Consultation-Liaison Psychiatry. As part of his training he also undertook a 2-year neuropsychiatry fellowship at the Royal Brisbane and Women’s Hospital (RBWH) and the Asia-Pacific Centre for Neuromodulation (APCN) at the University of Queensland. Currently, Dr Mosley works as a member of the deep brain stimulation (DBS) team at St Andrew's War Memorial Hospital, Brisbane, runs a private neuropsychiatry practice and also provides a consultation-liaison psychiatry service to the neurology, medical and surgical wards. Dr Mosley's private practice is focussed on neurodegenerative disease, movement disorders and head injury.
Dr Mosley is an active clinician-scientist with appointments at the QIMR Berghofer Medical Research Institute, Queensland Brain Institute and CSIRO. He completed his PhD in neuroscience in 2019 under the supervision of Professor Michael Breakspear. He published eleven peer-reviewed manuscripts and received the UQ Dean's Award for outstanding thesis. Dr Mosley has been the chief investigator in a study of the neuropsychiatric effects of DBS for Parkinson’s disease, a lead investigator in a clinical trial of DBS for obsessive-compulsive disorder and anorexia nervosa, as well as a clinical fellow in a neuroimaging study of Alzheimer’s disease.
Dr Mosley completed the first placebo-controlled, double blind, study demonstrating the benefits of repeated dosing with THC plus CBD (medicinal cannabis) for the suppression of tics in Tourette’s syndrome.
Study Particpant, Lives with TS
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Chris was officially diagnosed with Tourette Syndrome at the age of 12 although he started showing symptoms at 8 years of age.
Over the years he tried a number of different medications but none of them really helped. He had many negative side effects including one from a medication that left him in hospital overnight.
The longest any medication was tried for was on clonazepam. Chris took this for 14 years with minimal but some improvement to his condition. With nowhere left to go he heard about the medicinal cannabis trial being run by Dr Philip Mosley and the Wesley Institute.
Chris was the first participant in the medicinal cannabis trial and feels that he was very fortunate to have such a good response to it. The use of medicinal cannabis has allowed Chris to actually read a book for the first time in years. Prior to this his eye tics wouldn’t let him read anything…what a huge relief.
Chris comes to us as an adult with lived experience to tell his story about how Medicinal Cannabis has helped him and what was involved in the trial from a participants perspective.
What is new in the understanding and treatment of Tourette Syndrome?
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Professor Perminder Sachdev AM, MBBS, MD, FRANZCP, PhD, MFPOA, FAAHMS, Neuropsychiatrist
Perminder Sachdev AM MBBS MD FRANZCP PhD FAHMS is Scientia Professor of Neuropsychiatry, Co-Director of the Centre for Healthy Brain Ageing (CHeBA) in the School of Psychiatry, UNSW Sydney, and Clinical Director of the Neuropsychiatric Institute (NPI) at the Prince of Wales Hospital, Sydney, Australia. He is co-chair of the Australian Dementia Network (ADNeT) and Director of the Centre of Research Excellence in Vascular Contributions to Dementia. His major areas of research are drug-induced movement disorders, brain imaging, cognitive ageing and dementia. He has published over 800 peer-reviewed journal papers and 6 books, including one for lay readers (The Yipping Tiger and other tales from the neuropsychiatric clinic) and a book of poems (A migrant’s musings). He was named NSW Scientist of the year for Biomedical Sciences in 2010. In 2011, he was appointed Member of the Order of Australia (AM) for services to medical research. In 2018, he won the DARF-Yulgilbar Innovation Award for dementia research. In 2022, he was awarded the Ryman Prize by an international jury for the most significant contributions world-wide toward the health of older people.
Lived Experience: Surviving & Thriving
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James, or “Ninja Twitch” as he is known to many, is an adult with Tourette Syndrome and an ambassador for Tourette Syndrome Association of Australia. His inspirational appearances on several seasons of Australian Ninja Warrior has made him a fan favourite with kids and adults alike. Once described on the show as 'Ninja Royalty', James is a phenomenal advocate for people with Tourette Syndrome and brings a great energy to everything he does.
James is also the drummer in the metal band Annihilist and spent many years as a ninja coach and gymnastic teacher. On top of all of that James is also a qualified massage therapist and panel beater and is now working as a Support Worker and thoroughly loving it! When James isn’t working or being an adrenaline junkie he can be found in his ice bath.
James has embraced his Tourette Syndrome and loves assisting others in the TS community work towards building a positive outlook regardless of their situation.
TS: Genetics & Comorbidities
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Dr Shekeeb Mohammad MB BS, FRACP, PhD, Paediatric Neurologist
Paediatric neurologist – lead of paediatric movement disorder service at the Children’s hospital at Westmead and Kids Neuroscience Centre, Sydney
Worked as Program director for Postgraduate coursework at the University of Sydney 2016-2022
Now Research Education Academic Director for HDR students – Usyd
Current research on family expectations with paediatric DBS, genetics of childhood onset movement disorders and acute inflammatory encephalopathies.
Australian lead for the International Neurotransmitter disorder registry and the myoclonus dystonia registry
More than 70 peer reviewed publications
Neurodivergence and Eating and Feeding Disorder
Empowered for Advocacy
Dr. Amy Talbot BA Hons (Psyc), DClinPsy, MSc, Clinical Psychologist
Dr Talbot is the director, founder and senior clinical psychologist at The Talbot Centre, a leading centre of excellence and innovation in healthcare in Sydney’s Northwest. In 2018 she was awarded Australian Psychologist of the Year at the inaugural Australian Allied Health Awards. Dr Talbot provides clinical consultation, supervision and training to clinicians Australia wide who work with patients and families affected by eating and feeding disorders, anxiety, and obsessive compulsive and related disorders including tic disorders and Tourette Syndrome.
With over 10 years research and clinical experience, Dr Talbot has published multiple articles, and delivered keynotes, workshops, and training focused on her areas of clinical expertise. Dr Talbot holds a concurrent position as Senior Lecturer at the Australian College of Applied Professions. She practices from an inclusive, trauma-informed, body positive, neuro-affirming perspective and brings this foundation to all of her work.
Dr Talbot has a unique gift for translating scientific information and clinical concepts into accessible know how and practical strategies that facilitate improved health for individuals and community wide attitude change. Her current focus is on increasing awareness of and early identification of clinical concerns, championing the voice of lived experience and on improving the intervention evidence base to allow for better outcomes for families.