Click the image and listen to an Australian radio interview with team member Rosita.
Two young women from the Australian Tourette Community ask Why TTAG and How does it help the international Tourette Syndrome
Please help us with your contribution to raise funds to officially register and start-up Tics and Tourette’s Across the Globe (TTAG), an umbrella organisation representing Tic and Tourette Syndrome (TS) advocacy groups around the world. There are many Tourette Patient Associations across the world, but we decided that together we can achieve much more! There are also many parts of the world
without Tourette Patient Associations, something we think urgently needs to change.
How will your fund help you, a friend or a loved one with Tics/Tourette Syndrome?
Challenges faced as a result of the condition can be physically and psychologically crippling. People with Tourette Syndrome are often met with misunderstanding, and they have to combat ignorance, stigma and intolerance. Our objective is that our global collaboration of patient groups, experts and other supporting professionals will advance the rights of, and advocate on every level throughout the world for, people affected by TS and co-morbid conditions in order to help them fulfil their full potential.
Let’s make a difference together as we create a more universal approach, as we strive to improve the understanding of the condition, as well as to share Tourette Patient Associations successes and experiences. Together, let's inspire our community and beyond!
What is the team’s capabilities to form and run TTAG?
Our team consists of volunteers, all of them working for many years for Tourette Syndrome (TS) Patient Associations and other TS advocacy, medical and research groups. Team members have a wealth of professional experience, many of us also have personal/ lived experience with TS. Although this is the start-up of a new global umbrella organisation, our knowledge about Tics and Tourette Syndrome is very comprehensive and we possess a plethora of knowledge and experience as part of our broader professional life.
How was the idea conceived?
The first discussions took place at 2019 Tourette Syndrome and Tic disorders European conference, organised by the European Society of the Study of Tourette Syndrome (ESSTS) in Germany. Since then, we have established different working groups and had many online meetings to advance our idea to collaborate globally.
Our goal is to raise Euro 10.000. How would the funds be used?
The funds raised will go towards the registration and start-up of our global umbrella organisation. All TTAG team members are volunteers.
October 2021 Update
We just updated our GoFundMe goal to Euro 8.800. Why? We had generous donations of Euro 1,200 coming direct into our bank account. We are very grateful to those who donated and very excited that we are now closer to our end goal. Please keep supporting us! Thank you!
40% to cover lawyer fees, registration and notary fees.
20% to cover accountancy fees and accountancy software
40% to cover cost of website, hosting, domain name and membership database software (CRM)
Any funds remaining from start-up costs fundraising will be used on campaigns to raise awareness and acceptance of TS, producing materials that can be shared around the world and materials to lobby for better treatment and management for patients.
What do we do?
We campaign for equality, participation and equal opportunities for people with Tics and TS in all contexts of life leading to a better overall quality of life. Tourette Syndrome affects all ages: Children, Teens and Adults
Our VISION is inspired by a passionate belief in the collaboration between a united voice of advocacy and worldwide scientific research benefiting those affected by this neuropsychiatric syndrome.
Our objectives are:
- To promote TS awareness and information on a global level, promoting evidence-based treatment and supporting the efforts of its members throughout the world, in an effort to combat ignorance, stigma and intolerance with regard to TS.
- To establish and promote an exchange of information, experience, best practices and experts throughout the world in order to improve the lives of people with TS.
- To develop relationships and exchange information with other relevant international and/or global organisations with similar aims.
- To represent those concerned to all international institutions and liaise with other Non-Governmental Organisations sharing similar aims and objectives.
- To promote TS awareness and information on a global level, promoting evidence-based treatment and supporting the efforts of its members throughout the world, combating ignorance, stigma and intolerance with regard to TS.
- To support for, and participation in, national and international scientific research and surveys with particular emphasis on early diagnosis and intervention.
- To achieve these goals, the Association shall become a knowledge centre on the subject of funds, rules and regulations, gathering, disseminating and making this information available to its members. As an information centre, the Association shall encourage discussion, opinion forming, and public debate in the area of treatment for Tics and Tourette Syndrome as a neuropsychiatric disorder.
- TTAG shall raise the necessary funds to support its aims and objectives.
With your support we can officially start-up this important international organisation engaging experts and leadership from different Tourette Syndrome Patient Organisations, Health, Science, Business, Marketing and other relevant sectors from all over the world, with the aim of improving the care of TS patients, from the diagnosis to the therapy and global management of the condition.
What other ways are there to help?
There are various ways you can get involved and make a lasting difference on a global scale
1. Understanding Tourette Syndrome is the first step..
What is Tourette syndrome?
Tourette syndrome (TS) is a neurological disorder characterised by involuntary muscle movements and vocalisations, known as tics.
TS doesn't affect cognitive ability, however most people with Tourette's are also diagnosed with comorbidities such as autism, attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD).
TS is a lifelong condition, but some therapies and medication can be offered to patients to improve tic severity. There is no specific medication for TS, but other medications can be prescribed. Medicating TS is a hard task, as no medication works the same for two people and some medications can exacerbate tics or mental health issues.
TS is not a rare disease! With a prevalence of 1% among the general population, over 78 million people are affected by Tourette Syndrome worldwide.
TS can have a significant impact on the quality of life of individuals, impacting both their working/educational life as well as their social and familial life. However, it is often misdiagnosed or not recognised, or finally diagnosed after a long delay.
The condition is commonly misunderstood, stigmatised, and under-diagnosed due to a general lack of awareness amongst the community, as well as health and education sector workers. The most striking challenge about Tourette Syndrome is the 80% rate of comorbidities, with tics often being “just the tip of the ice-berg”, and psychiatric and developmental comorbidities creating the greatest disability:
80% of TS sufferers will have multiple diagnoses
60-80% will have Attention Deficit Hyperactivity Disorder, many have comorbid Oppositional Defiant Disorder (ODD)
25-70% will suffer “rage attacks” which may be classified as either Disruptive Mood Dysregulation Disorder (DMDD) or Intermittent Explosive Disorder (IED)
40-60% will have Obsessive Compulsive Disorder/other anxiety disorders
35% will have Autistic Spectrum Disorder, of those that don’t reach the criteria for this diagnosis, many will have problems with theory of mind, executive functioning, and social skills (often mood dependent and related to emotional dysregulation)
30% will have Bipolar Spectrum Disorders
25% will suffer Major Depressive Disorder
65% will suffer Sleep Disorders
40% will suffer comorbid chronic physical health conditions
40-50% will suffer significant learning disorders
A significant proportion suffer Sensory Processing Disorders
Please support us today with your donation and sharing our message with your social networks.
Tourette Syndrome (English) https://youtu.be/pPu4xGqj9rs
Tourette Syndrom (German/Deutsch) https://youtu.be/0T3fm66mKAg
Sindrome di Tourette (Italian/Italiano) https://youtu.be/5ueW7ss4xx4
Le syndrome de Gilles de la Tourette (French/:Français https://youtu.be/FBYZR5H49Tc
Thank you! Your TTAG team
2. Membership to TTAG will soon open. Expression of interest can be expressed to: Seonaid@neuro-diverse.org
3. We also welcome more Patient Associations from across the world and more volunteers, in particular in the area of law, accounting, finance and translations.
Our start team consists currently of:
Iktic Tourettevereniging België vzw Jetique Association Tourette Belge asbl
Tanja Thijs – Chairperson
Monique Verstraeten _ Board member
Dr. Seonaid Anderson _ Board member
Dr. Seonaid Anderson _ Director of Neuro-Diverse.org Belgium
Michele Dunlap _ Chairperson, Tourette Gesellschaft Deutschland e.V.
Dr. Karin Malisch _ Boardmember Interessenverbands Tic & Tourette Syndrom e.V. (IVTS)
Liv Irene Nostvik _ CEO of the Norwegian Tourette Association
Lisa Keenan _ Researcher at UCD Neuropsychology Lab
Paula Huttunen _ Patient Group Representative from Finnish Tourette Association
Dott.ssa Donatella Comasini _ President of Associazione Italiana Sindrome di Tourette (AIST)
Roxana Apollonio Cabrera _Representative of the Spanish Tourette Syndrome Association: Acovastta
Vasco Conceicao _ Member of the Portuguese Tourette Syndome Association (APST)
Rosita Sunna _ Tourette Advocacy Australia. Director of Rosita Sunna Consulting