Support Network Meet Up for Children with A-T

Life for sufferers of Ataxia-Telangiectasia (A-T) and their families can be very isolating.

What is Ataxia-Telangiectasia (A-T)?

A-T is an inherited neurodegenerative disorder that currently affects around 30 children  and early adults in Australia. There is a lack of information and focused support for a relatively rare but complex and debilitating condition. Find out more about the condition here.

With approximately 30 children currently diagnosed in Australia with this devastating genetic neurodegenerative disorder, WMR has endeavoured to address this isolation by hosting the opportunity for families of sufferers to meet with people and families who understand what impact this condition has upon them.

That’s why WMR is very supportive of working with Professor David Coman and the BrAshAT Foundation to host the National Ataxia Telangiectasia Clinic several times a year.

National Ataxia Telangiectasia Clinic

Patients with A-T and their families are able to access, through these clinics, a range of medical specialists and professionals to help monitor and manage the condition and perform essential research and data collection that could lead to the discovery of treatments or a cure.

While parents and specialists discussed the serious implications of the disease, and detail the issues they’re facing, the A-T affected children played together in a simple game of balloon tennis.

Children are entertained while parents consult with clinicians

As well as providing a supportive network, the Clinic offers families of A-T patient’s access to neurologists, pediatricians, dietitians, respiratory specialists, immunologists and geneticists who have experience in dealing and managing the symptoms and side effects of this genetic disorder.

The A-T Clinic is the only dedicated A-T clinic in Australia and aims to:

• Promote and offer access to A-T research projects
• Facilitate the involvement in clinical trials
• Strengthen support network amongst A-T families
• Develop expertise to manage this complex disorder
• Provide access to new and existing treatments
• Improve quality of life and health outcomes
• Be a part of an international network of Ataxia Telangiectasia clinics

Please consider donating to WMR. 

Without kind donations, the work of the WMR to host clinics and support research projects that improve the day to day lives and outcomes of patients with A-T could not continue.

This event was made possible with the support of John and Wendy Thorsen.