FAST Australia – Building Community and Finding a Cure
FAST Australia, one of the first branches of FAST, was founded in 2010 by a group of determined and dedicated parents of children with Angelman syndrome (AS) led by Meagan Cross and Jennifer Kyriacou.
In 2008, after months of searching for answers, at 13 months of age Meagan’s second child, Molly was diagnosed with AS. The first night of the diagnosis, Meagan came across a paper by Dr. Edwin Weeber about how genetic engineering rescued certain aspects of the AS phenotype in mice. She immediately emailed him and connected with Paula Evans, Chairperson and founder of FAST in the United States. This is when the vision for FAST Australia was born.
Around the same time, Jennifer was looking for answers for the developmental delays in her daughter Lucy. At the age of one, Jennifer met with a developmental pediatrician who suggested genetic testing, which confirmed AS. After Lucy’s diagnosis, Meagan and Jennifer connected with other like-minded Australian parents and founded FAST Australia with its own Board of Directors and Scientific Advisory Board who were experts in their disciplines.
Goals of FAST Australia:
- Assist individuals living with AS to realize their full potential;
- Complement the work done by FAST in the US to find treatments that will improve the symptoms of Angelman syndrome; and
- Research to find a cure.
Since its inception, FAST Australia has raised over two million dollars of which $1.5 million has been invested in research and education. They have held three conferences with researchers and experts from within Australia and globally. FAST Australia is hopeful that newborn screening will be available in Australia and perhaps globally through work that has been funded in Melbourne, and this will assist in infants accessing the best treatments at an optimum time. FAST Australia has co-funded projects with FAST US, such as the funding of the Angelman syndrome pig model and the humanized mouse model. FAST Australia has partnered with the Angelman Alliance in the European Union and has also formed a great partnership with a sister organization in Australia, the Angelman Syndrome Association Australia, who supports and networks with families affected by Angelman syndrome, assisting with navigating therapies and access to funding under the Australian system.
A highlight of the work undertaken by FAST Australia has been the creation of the Global Angelman Syndrome Registry. The Registry is a global initiative that collects data on individuals with AS through a series of online surveys. It is the largest and most comprehensive collection of information on AS to date with over 1400 participants from 64 countries around the world.
The most pressing issue for FAST Australia is to increase the diagnosis rate in Australia and to connect with those families at or shortly after diagnosis. Australia is the same size as the United States (minus Alaska), yet the population, which is 1/13th that of the US, is far more spread out. Hence, identifying and connecting with these families remains a challenge.
FAST has brought us to a pedestal where the future, for individuals with AS and their families, is only bright. Our vision is that in the next three years scientists will be perfecting treatments that will be in the clinic using the information collected through the Global Registry and that families will be selecting which treatment is best for their child.