A TEAM of 73 runners from New South Wales will compete in the Surf Coast Century this Saturday to raise much-needed medical research dollars for the Sanfilippo Children’s Foundation and help shine the spotlight on the condition.
Sanfilippo syndrome is a rare genetic condition that causes progressive fatal brain damage. Life expectancy is just 12-20 years and, as of right now, there is no approved treatment or cure.
The team will be running along beaches, clifftops and into Anglesea’s bush hinterland as part of the foundation’s flagship event, the SFSuper Series, which combines six super events (a run, cycle, swim, CrossFit challenge and family fun run) in a fundraising research effort for the fatal childhood disease.
The foundation was started by Sydney mother Megan Donnell following the diagnosis of both her children, Isla (9) and Jude (7) with Sanfilippo syndrome.
This is the third time Megan and Allan Donnell will run the Surf Coast Century but this year they will be joined by 71 supporters (friends, family and even strangers), mostly from the Northern Beaches of Sydney.
The team has one team member running 100km (solo), 12 people running 50km and 15 relay teams of four in the 100km event.
“I know the Surf Coast Century will be a challenge but this is nothing compared to the challenge of what the future holds for my children,” Mrs Donnell said.
“Isla and Jude are still doing relatively well – they are still talking, eating, walking and learning – but we know what’s coming. The projection of the disease means they can regress very quickly, and this is why funding further research is critical.
“These kinds of events are great in raising awareness of the disease but also in helping us to raise vital research funds.”
For more information on the SFSuper Series, head to sfsuperseries.com.au.
For more information about the Sanfilippo Children’s Foundation or to donate, head to sanfilippo.org.au.