Tourette Syndrome Awareness Week – aligning missions to do great things for our community

Tourette Syndrome Awareness Week

Each year in the first week of May, the Tourette Syndrome Association of Australia (TSAA) holds a National Awareness Week to help spread the message of Tourette Syndrome (TS). The intention of the week is to make us stop, think and understand more about Tourette Syndrome and to encourage everyone to do one thing in order to enhance knowledge and understanding in the community.

Each year in the first week of May, the Tourette Syndrome Association of Australia (TSAA) holds a National Awareness Week to help spread the message of Tourette Syndrome (TS). The intention of the week is to make us stop, think and understand more about Tourette Syndrome and to encourage everyone to do one thing in order to enhance knowledge and understanding in the community.

In 2020, Tourette Syndrome Awareness Week falls on this week (4-10 May). With COVID-19 and the associated pandemic being so prevalent this year, the focus of the campaign is on the pandemic, the impacts it has had, and resources to manage self-isolation in the COVID-19 environment for those living with Tourette Syndrome.

Adjusting to self-isolation and social distancing measures has and continues to be a challenge for us as a society. However, those living with Tourette Syndrome face a whole new set of difficulties and it seems that they are experiencing exacerbated symptoms as a result. The pandemic is exacerbating involuntary behaviours and ‘invisible’ conditions associated with TS and this poses a problem as these are still widely misunderstood.

In the current environment, those with conditions such as involuntary coughing, sniffing or throat clearing tics are experiencing adverse reactions from the public who mistake tics for sickness. This in itself highlights a strong need for a greater understanding around the complexities of the disorder.

So what is the TSAA currently doing to support those living with TS and their families during this time? As President of the TSAA, I am very proud of the work we do every day. To coincide with Tourette Syndrome Awareness Week, we are promoting an initiative called the Pandemic Panic Pack (PPP) to support families and adults through this unprecedented time along with resources to generate understanding and educate Australians on how the pandemic is affecting those with TS. We are also urging the public to be understanding and we are offering support and advice for children and families in the form of the PPP. To learn more about Tourette Syndrome Awareness Week, the Pandemic Panic Pack and our initiatives this year, please click here.

The work I do at the TSAA is significant on a personal level and for our community, however it is also strongly connected with the work I do as an academic.

As an academic at Torrens University Australia, I connect to the Here for Good mission which is part of the DNA at Torrens University Australia. Connecting this mission and ethos with my personal knowledge and networks, creates the possibility of amazing things. I spoke with Michael Mackenzie on ABC Radio National earlier this year about Tourette Syndrome and the portrayal of the condition. You can listen in to the podcast here.

You may recall in 2019, Torrens University students Andy Lee and Ruby Trenerry designed TAC’TICS, a scalable and immersive scavenger hunt app to promote awareness and understanding of Tourette Syndrome.  This project was envisioned at our Billy Blue College of Design at Torrens University and was launched at our 2019 Laureate Australia and New Zealand Leadership Summit in Melbourne. At the Summit, $12k was donated to the TSAA, which was significant in helping TAC’TICS take flight across Australia. It was wonderful to see TAC’TICS generating national discussion and making national press coverage on multiple platforms last year. You can hear more about what we did last year, in this video here.

I am so proud to see the amazing work and connection of mission between the TSAA and Torrens University continue this year. As President and CEO of Torrens University Linda Brown said last year,

“It is a project that is fundamentally Here for Good. Through Torrens University, Think Education and the Media Design School, each of us has an incredible platform to think outside the box, and we all have the opportunity to unite through our purpose of being Here for Good.”

Our design students work on rebrand

This year I worked with and collaborated with Bachelor of Media Design, Media Design School (MDS) students in Adelaide on a live brief project, to develop online resources for education of TS and rebranding for the Association. They had to deliver a proposal, strategy/management plan, final submission and personal reflection for this project.

As their client, the students met with me at regular briefings and presentations and I provided feedback points throughout the trimester. The final results surpassed my and the committee’s expectations in calibre, practical usefulness for the Association as well as quantity. The output for a 12 week period from 6 students was prolific.

As Tourette Syndrome Awareness Week is this week, their designs are being rolled out across our various media platforms in the form of the rebrand. TSAA has used the same logo since 1989 and apart from being somewhat fatigued by it, I have to say it always underperformed in its static form for an Association representing a movement disorder. As this element was key to the brief the final logo design landed beautifully with the simple yet effective ‘action’ marks that could represent both movement and sound — the two criteria required for a diagnosis of Tourette syndrome. You can see this work on our TSAA website, here.

I am so proud of this work not only as a member and President of the Tourette Syndrome Association of Australia, but as an academic and a member of the Torrens University, Think Education and MDS community, especially on awareness week.

Let’s work together to spread the news and raise awareness of pertinent issues in our community and wider society. Let’s demonstrate the power that we have as educators and how amazing things can happen when strong missions are aligned.

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