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BrAshA-T Ataxia-Telangiectasia

BrAshA-T was founded in 2007 by Sean and Krissy Roebig from Brisbane (Australia) after two of their young children, Brady and Ashleigh, then aged 3 and 2 respectively, were diagnosed with A-T (Ataxia-telangiectasia pronounced ay-TACK-see-uh Tey-LAN-jick-TAY-sha).

Determined to do something about their situation, the Roebigs created the charitable foundation called BrAshA-T to raise money to support research into finding a cure and as a means for creating a support network for other families dealing with A-T.

What is A-T

A-T is a rare and incurable disease often described as the worst parts of cerebral palsy, muscular dystrophy and cystic fibrosis. Throw in a dose of cancer and lung disease and you have a general picture of this relentless condition.

Children are born apparently healthy but from around two years old their balance and coordination deteriorate and they are often described as ‘wobbly’ or ‘clumsy’. Most children with A-T require the regular use of a wheelchair before their teenage years and as time progresses, need full-time care.

Children will often have problems reading and speaking but their minds are unaffected. The condition also affects the immune system, leading to frequent chest and lung infections and a high risk of leukaemia and other cancers.

BrAshA-T's Mission

As A-T is such a rare disease (approx 50 diagnosed patients in Australia), families feel very isolated and alone. Our goal is to change this for families and let them know they are not alone and someone is fighting for their children’s future.

  • Research: fund medical research into the causes, prevention and treatment of A-T
  • Awareness: engage in activities to raise community awareness of A-T
  • Support: provide emotional support and limited financial assistance for sufferers of A-T
  • Fundraising: engage in fundraising activities to make it possible to fulfil Our Mission
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