How a devastating diagnosis inspired a passion for health and medical research

The Incredible Story of Megan Donnell 

When the rare and devastating Sanfilippo Syndrome struck Megan Donnell’s family, she responded by setting up a $3 million Foundation to fund high-quality medical research into the condition. 

Sanfilippo Syndrome is an extremely rare, genetic disorder which causes progressive brain damage. Currently, there is no cure. Reeling from the news that their own two children had been diagnosed with Sanfilippo Syndrome, the Donnell family were reportedly told by doctors “not to bother chasing cures because there aren’t any.” Ms Donnell resigned from her role as a management consultant to establish the Sanfilippo Children’s Foundation.

In the four years since its establishment, the Foundation has raised close to $3 million in support of its mission to fund medical research into Sanfilippo Syndrome. Megan is being honoured tonight at Research Australia’s annual Health and Medical Research Awards with the Advocacy Award for her incredible work in establishing the Sanfilippo Children’s Foundation.

“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 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. Research Australia is the national advocacy body for health and medical research.

Media Contacts:
Wendy McWilliam, Strategic Communications Manager, Research Australia – 0413 598 857
Ingrid Maack, Sanfilippo Children’s Foundation – 0422 656 465

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