TEFMA is pleased to support its nominated charity, BrashA-T Ataxia. TEFMA supports BrAshA-T through raising awareness, fundraising at events and by donating to the the charity in lieu of speaker gifts at TEFMA hosted workshops and forums.
What is Ataxia-Telangiectasia?
Ataxia telangiectasia (A-T) is a primary immunodeficiency disease that affects a number of different organs in the body. It is a rare and incurable disease often described as the worst parts of cerebral palsy, muscular dystrophy and cystic fibrosis.
A-T occurs when a child is born with both copies of the “ATM” gene disrupted, which prevents his or her cells from producing any ATM protein. As children with A-T lack the ATM protein they are unable to properly repair or respond to certain types of DNA damage, giving rise to genetic instability and as a consequence, an increased risk of cancer, in fact, a risk 1,000 times greater than the general population. About one-third of children with A-T will develop cancer.
For reasons yet unknown, A-T affects the cerebellum, which is responsible for muscle control. As the cerebellum cells start to die, impaired muscle control results in difficulty with balancing, walking, co-ordination and fine and gross motor skills. This eventually leads to a loss of any movement or activity that requires the use of a muscle – eye movements, speaking, writing, swallowing, bladder control, breathing, coughing. Children with A-T are generally confined to a wheelchair between the ages of 8-10 years old, and rarely survive beyond their 20s.
BrAshA-T aims to raise awareness about A-T and to raise much needed funds for ongoing research currently in progress.
We encourage our network to donate here
Why are TEFMA aligning with BrAshA-T as their charity partner?
Wayne Millar, TEFMA Vice President, is a grandfather of two, Charlie and Zara Millar, who were both born with this disease. The first major fundraiser for TEFMA supporting BrAshA-T was the 2018 TEFMA Awards Dinner which was held at Crown Perth which managed to raise over $1,000.00 thanks to everyone's kind support.
The below photo was taken when they were surprised by the Sunrise morning TV show at their home in Wagga Wagga prior to Christmas. To watch the sunrise segment, please click here.