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Newly appointed lay members for our Scientific Advisory Board (SAB)

Posted on 19 February 2020 by Helen Eadie

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We are delighted to welcome three new SAB lay members, who will help guide our research funding decisions.

Tourettes Action is now in its fourth year of awarding research grants for research focusing on the treatment and management of Tourette Syndrome. Tourettes Action believe both lay and scientific perspectives are important when making research funding decisions, as each brings a very different perspective to the funding process. By having lay members on the TA Scientific Advisory Board (SAB), this helps ensure that the issues that matter to people affected by Tourette Syndrome are reflected in all our funding decisions. The SAB also has scientific experts from the field who assess research grant applications based on their scientific excellence, quality and potential to deliver significant results.

We have recently welcomed three new lay members; Matt Toghill, Amber Wilson and Justin Champagne to the SAB, who will take turns to give their much-needed perspectives on research funding applications that TA receives.

 

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Matt Toghill

"My name is Matt Toghill and I’m a dad of two boys; Freddy who is five and Tom who’s thirteen and has had Tourette Syndrome since he was six years old. I helped to set up a Tourette’s support group for Sussex six years ago and have supported its activities within the community since.  At work I am the head of engineering for a large property management company. I am really enthusiastic about supporting Tourette’s Action’s work in future research as a lay member of the scientific advisory board."

 

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Amber Wilson

"My name is Amber Wilson and I was diagnosed with Tourette Syndrome at the age of 7. Tourette's runs in my family as my Dad and 3 younger siblings also have this diagnosis and we have certainly experienced a variety of tics over the years. After finishing my Psychology BSc in 2014, I started my first role in Medical Research and am now working as a Clinical Trial Project Manager at the University of Southampton. My current role is based in the Neurosciences department, but I have also worked in the fields of Cancer, Haematology, Intensive Care and Cardiology. I hope to bring my experiences as both a patient and a Research Manager to Tourettes Action, and very much look forward to working with the team!

 

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Justin Champagne

I'm Justin Champagne. Our son Jacques is 11 and started showing symptoms of Tourette's when he was 3 but was only officially diagnosed aged 10. We were fortunate to get involved with Tourettes Action last year having spent a weekend at Tic Fest in Kent. It was a fantastic experience for our son, and an eye opener for me having never really come into contact with other people whose lives are similarly affected.  I have volunteered as a Research Advocate / Lay Reviewer for a Cancer charity for a number of years now and was delighted to be invited to join the SAB where hopefully I can bring some of that experience and patient advocacy to the process so I'm really looking forward to getting started.

At school, it's heartwarming to see Jacques' peers acceptance, understanding and tolerance of his tics but I regularly find myself educating adults and correcting their misconceptions over TS and hope in my own small way it's possible to really make a positive difference.  

In my spare time during the day I am an Operational Relationship and Project Manager for a major IT vendor who are very supportive of my volunteer work.


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