With a relatively small Angelman syndrome (AS) population (statistically around 1500 cases) spread across our wide brown land, the Foundation for Angelman Syndrome Therapeutics (FAST) Australia has had an amazing first two years. A number of fantastic events organised by dedicated families and friends; a Night at the Races, the glamorous Night for Angels in Sydney and the Take Flight for Angels Gala Ball in Launceston have contributed to our success In addition to these events, family and friends who care for individuals with Angelman syndrome have put their bodies on the line entering events; marathons, half marathons, mud runs, fun runs – even a wheelbarrow race, and of course our regular monthly donors! FAST Australia was formed to both compliment and join forces with FAST United States, however with research taking off at breakneck speed in the US there has been no laboratory research into Angelman Syndrome in Australia to date – that is all set to change!
The launch of the FAST Integrative Research Environment (FIRE) brings together four world class research laboratories, creating the perfect opportunity for Australia to enter the fold. Thanks to monumental fundraising efforts, including a very impressive eighty thousand dollar profit from A Night for the Angels Gala Ball in Sydney, we are able to offer our first Post Doctoral Fellowship Grant for an Australian researcher to learn from a team with extensive Angelman syndrome research targeted specifically at our goals. The initiative creates a unique opportunity where potential candidates can match their skills with one of the four US labs; Weeber Lab in the University of South Florida, Texas A&M University, University of California Davis or Baylor College of Medicine. After a two year appointment in the United States, where the candidate will be actively working on joint FAST goals under the umbrella of the FIRE project, he/she will receive seed funding to continue Angelman syndrome research in Australia. FAST Australia has committed $150,000 to the FIRE initiative in the form of at least one research fellow.
On February 1st 2013, FAST will host it’s first Angelman Syndrome Symposium at the Royal Children’s Hospital in Melbourne, Australia; uniting Australian researchers (including the Australian scientific Advisory board) with three of the four FIRE laboratory heads; Dr Edwin Weeber, David Segal and Scott Dindot. US researchers will discuss the state worldwide AS research including developments, challenges, updates from the minocycline clinical trials and the FIRE initiative. The day will include an afternoon brainstorming session for researchers and medical professions to ensure the post-doctoral vacancy reaches the widest range of best possible candidates, future research collaborations and opportunities for Australian participation. and potential venues for the candidates return.
Families and friends will get the opportunity to meet the researchers, hear up to date information on research and connect with others in an informal setting on the evening of February 1st. (7 – 10.30 pm – details to follow). Funds raised from the Take Flight with Angels Gala Ball in Launceston (approximately twenty five thousand dollars) will directly fund an Australian Research Assistant to work with Dr Honey Heussler and her team at the Mater Hospital and Mater Medical Research Institute to further develop, collect and collate data for the much anticipated Angelman Syndrome Research Register. The register will provide the perfect tool for future clinical trials in Australia.
FAST Australia is enormously grateful for the support and efforts that have brought us to this pivotal point in Australian research, driving us towards safe and effective treatments and ultimately a cure for Angelman syndrome. This is a very exciting time for our loved ones and for Australians as we take an active role in creating a brighter future for individuals with Angelman Syndrome, in our country and abroad. As we are poised to make a global impact on this rare but potentially treatable disorder, we ask all of our supporters to commit to ensuring our success as this is just the beginning of our exciting and promising journey.
Enquire about the symposium or parent evening – info@cureangelman.es.au