About Us
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.
Our Mission
As Ataxia-Telangiectasia is such a rare disease (approx 40 diagnosed children 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 with DGR Status
BrAshA-T Ataxia-Telangiectasia Limited is a not-for-profit company limited by guarantee 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:
| President | Mike Clahsen |
| Vice-President | Natalie Elkheir |
| Secretary | Jenny Johnston |
| Treasurer | Yvonne Gills |
| Director | Leah Ward |
| Director | Gabe Marcialis |
| Director | Caitlyn Graham |
Our Achievements So Far
Since getting up and running in late 2007, we are starting to bear the fruits of our efforts with considerable progress towards achieving our long-term goals:
- Created a support network for families around Australia affected by A-T who are now in contact with each other as well as the foundation.
- Established a National A-T Clinic, supported by the Queensland State Government, UQCCR and The Lady Cilento Children's Hospital, which provides a team of expert doctors who will see every child in Australia diagnosed with A-T.
Specialist doctors will be in attendance from Neurology, Immunology, Respiratory, Oncology, Genetics and Psychology along with a Pediatrician on board to oversee general care. Also available will be therapists from Allied Health - speech, OT & physio. These clinics take place two to three times a year. - Committed ongoing funding towards an allowance program to enable A-T families to attend the National A-T Clinic.
- Committed ongoing funding to support a team of researchers from UQCCR (University Queensland Centre for Clinical Research) led by Professor Martin Lavin.
- Committed ongoing funding to support a team of researchers from AIBN (Australian Institute for Bioengineering and Nanotechnology) led by Professor Ernst Wolvetang.
- Funded researchers to attend Scientific Research Meetings at ATW2008 in Shiga (Japan), ATW2010 in Los Angeles, ATW2012 in New Delhi and ATW2015 in Beijing.
- Funded researchers to attend the A-T Clinical Conference in the Netherlands in 2014 and Warsaw in 2016.
- Raised significant funds through holding events such as Charity Dinners, Movie Nights, Golf Days, Membership Drives, Merchandise Sales, etc.
- Operated the foundation on 100% volunteer effort thereby ensuring maximum funds are directed to finding a cure for A-T.
