Many parents focus on their child’s growth patterns and milestones – comparing the developments of siblings, and friends, concerned that their child is falling behind, or that something might be wrong. Parents are told to “be patient”, that “each child develops at their own rate” but for Meagan Cross, she knew that there was more to it, and that something wasn’t quite right with her angelic five-month old Molly.
After endless research, many months of worry and many misdiagnoses, Meagan was informed that Molly had Angelman Syndrome, a rare neurogenic disease. Affecting one in 15,000, Angelman Syndrome is often characterised by speech impediments, sleeping troubles, seizures, mobility problems and an unusually happy demeanour.
With her world turned upside down, Meagan set out to find out more information and was disappointed by the lack of research available. Refusing to believe that the condition couldn’t be treated, she set out to drive change, to ensure that there was brighter future and better quality of life.
This is how Foundation for Angelman Syndrome Therapeutics Australia (FAST) was born, from a group of parents seeking to address the lack of research and understanding into Angelman Syndrome in Australia, creating a powerful force in the search for therapeutic interventions and a cure to treat Angelman Syndrome.
“Most importantly, we have created a community, which today provides tremendous light in a dark tunnel – giving much needed emotional support for parents.”
“The information available to parents about Angelman Syndrome is often wrong and incredibly negative, and I refused to accept that there was nothing we could do. So perhaps most importantly, one of the big things we set out to do was create a community, which today provides tremendous light in a dark tunnel – giving much needed emotional support for parents,” said Meagan Cross, Co-Founder of FAST.
Because of the rarity of the disease, there is a lot of confusion around the syndrome, with many kids and adults still undiagnosed. Meagan believes that the information they share today will shape the future of Angelman Syndrome, ultimately helping to provide greater clarity and support for parents.
“Molly is not the sum of her diagnosis. She has Angelman Syndrome but she’s not Angelman Syndrome and that’s what we want to share with other parents. They’re extremely social individuals, they’re incredibly happy, and real jokers. I suppose if you can only communicate ‘hello’ with a hug, then that’s what they do and they have a happy, loving nature and that’s an amazing thing, because it helps deal with all of the other difficulties that they face every day.”
“Molly is not the sum of her diagnosis. She has Angelman Syndrome but she’s not Angelman Syndrome and that’s what we want to share with other parents.”
FAST was one non-profit selected by Australians recently to receive a donation of US$50,000, as s part of Microsoft Australia’s Windows 10 #UpgradeYourWorldAU initiative. Thanks to loyal supporters, the grant will enable FAST to raise awareness, while also developing further research.
“It’s a great feeling to have a community get behind us, give us their support and vote. We haven’t had a donation of this size to date, and as we’re a little known condition, it feels great to be recognised for our hard work as we continue to strive in finding a cure for a cause that is so close to our hearts.”
“It feels great to be recognised for our hard work as we continue to work to find a cure for a cause that is so close to our hearts.”
“We are about to launch an online patient registry, which will be the first of its kind around the world. Using the database, parents will be able to log in from their computers at home and complete a series of questions to not only help them to understand the syndrome better, but also so we can find out what the real incidence rate is once we get good, global participation. We expect this registry to be a really powerful tool. There are currently a lot of assumptions around Angelman, so this will provide us with greater clarity around the disease, which will bring us closer to finding a cure,” concluded Meagan.
“Microsoft is incredibly proud to be supporting FAST to drive awareness and move closer to finding a cure for Angelman Syndrome. We are committed to celebrating those who make an impact in their community and around the world, and FAST is a great example of a community of people, supporting eachother to drive change,” said Anna Howarth, Citizenship Manager, Microsoft Australia.