Nadia Levin, CEO of Research Australia, said the night was a magnificent success that paid tribute to the efforts and energy of some of the sector's biggest names and most promising up-and-comers.
“By shining a light on this rare and terrible condition, Megan has shone a light on the role health and medical research can play in alleviating the suffering of so many families. Megan’s Foundation has funded 7 different projects including [co-funding] a pioneering gene therapy human clinical trial currently underway here in Australia.
“As the national peak body for the health and medical research sector, we are happy to recognise organisations like the Sanfilippo Children’s Foundation who promote stronger links between researchers and health consumers. The health and medical research sector owes Megan a debt of gratitude for her incredible work and we were thrilled this year to see her win the Advocacy Award,” said Research Australia CEO, Nadia Levin.
Megan was nominated by two of her rare disease peers: Sean Murray, CEO of AMDF (Australian Mitochondrial Disease Foundation) and Tara Morrison from HCU Network Australia. Megan accepted the award on behalf of the Sanfilippo Children's Foundation in a tribute to all families with children battling Sanfilippo.
"It's such an honour and I am incredibly humbled. I was nominated by two fellow rare disease advocates. We work collaboratively and I think that's very important for the rare disease community to continue to do, particularly with the development of genomics and the amazing things which that's going to bring to our community from pre-conception screening right through to treatments."