About Us

BrAshA-T was founded in 2007 by Sean and Krissy Roebig from Brisbane (Australia) after two of their young children, Brady (30 Oct 2003 - 9 Jun 2024) 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. More...

Our 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

100% Voluntary-run with DGR Status

BrAshA-T Ataxia-Telangiectasia Limited is a not-for-profit charity which has been endorsed by the ATO as a DGR (Deductible Gift Recipient).  

You are welcome to inspect our registration with the ACNC (Australian Charities and Not-for-profits Commission).

We are a 100% voluntary-run organisation thanks to the tireless efforts of an army of supporters and a most committed Board:

Founder, Krissy Roebig, resigned from the board in 2015 to devote time to her family.

The A-T Global Alliance

We are a founding member of the A-T Global Alliance which was established in 2020 to maximise the effort, resources and funding committed to finding a cure or treatments for A-T.

With increased funding and a continued global and collaborative effort, effective treatments for A-T will be developed sooner and the lives of those affected will be changed for the better.

Through the web site, cureat.org, the alliance also created a Global Directory which provides useful information (e.g. care guides, the latest research studies and publications) for patients and their families, researchers and clinicians.

We are just one of many Rare Diseases

We are a partner of Rare Voices Australia (RVA) who is the national peak body providing a unified voice advocating for the best outcomes for Australians living with a rare disease.

RVA's RARE (Rare Awareness Rare Education) Portal contains current, reliable and straightforward information and resources for all rare disease stakeholders customised for the Australian context. It includes a dedicated web page for each of the 700+ rare diseases including the A-T web page.