Last year 60 runners participated in the Surf Coast Century to raise vital research funds for the Sanfilippo Children’s Foundation - which aims for a cure for the childhood neurodegenerative disease.
It was one part of Sanfilippo 1000 – Big Feet for Little Feet, which also included a 171km bike ride from Anglesea to Port Campbell the following day.
This year they are aiming for even more runners, as part of the SFSuper Series - s a series of events that supports the Sanfilippo Children’s Foundation - which encompasses a run (the Surf Coast Century), cycle, CrossFit challenge and family fun run.
The Sanfilippo Children’s Foundation was established by Sydney mother Megan Donnell in 2013 following the shock diagnosis of not one but both her beautiful children, Isla and Jude, with Sanfilippo Syndrome. The condition is progressive, degenerative and sadly always fatal!
Sanfilippo Syndrome is a rare, genetic condition that causes fatal brain damage. It’s referred to as a childhood disease as most patients never reach adulthood. Every year worldwide an estimated 2000 babies are born with this neurodegenerative disease.
This is the inspiring story of the Donnell family (both parents ran the SurfCoast Century last year), and the efforts of the Sanfilippo Children’s Foundation to move mountains for an entire generation of children battling this rare disease.
You can read about this family’s fight in the Sydney Morning Herald’s Good Weekend Magazine HERE.
Join the SFSuper Series Team
Your participation in the Surf Coast Century is an extremely impressive act. It takes great commitment and incredible effort and endurance. Your hard work can also help make a difference to families of children battling Sanfilippo
To join the SF Super Series Team go to www.sfsuperseries.com.au where you can register for the race and join the team in one go.
If you or your team have already registered for the Surf Coast Century through the Rapid Ascent site, then just email the SF Super Series on firstname.lastname@example.org and they can join you up.
As part of the SF Super Series team you receive:
• Registration to the the Surf Coast Century race and all the inclusions that all other entrants receive (go to http://rapidascent.com.au/SurfcoastCentury/ for more info)
• A 12-week training schedule written especially for the distance you have chosen by our running expert, Gary Mullins from www.runninggroups.com.au
• Access to training groups (this is dependent on your location, but we will endeavor to find you a trainer and a group)
• Regular team updates with training and fundraising tips and videos
• A runners kit including a training shirt, cap, bottle and other surprises
• A great supporter group cheering you on through the event
• Free access to a dedicated physio and masseur after the event*
• Prize incentives for fundraising targets reached including an automatic entry into a holiday prize for every $100 you raise.
• All the camaraderie and support of the SF Super Series team
• If you fundraise in excess of $1000, we will cover the cost of your race entry
* A minimum fundraising tally applies to these items.
More information on the Foundation
For more information on the Sanfilippo Children’s Foundation go to: www.sanfilippo.org.au
You can also follow the Foundation on Facebook - @sanfilippochildrensfoundation, Twitter - @SFCFoundtn, Instagram - @sfcfoundtn
What is Sanfilippo?
Sanfilippo children are born seemingly healthy, however over time the brain gets progressively damaged. Children experience hyperactivity, sleeplessness, dementia, loss of speech and cognitive skills, mental retardation, cardiac issues, seizures, loss of mobility and finally death.
There is currently no effective treatment or cure, and life expectancy is just 12-20 years. Because it is such a rare condition, most people have never heard of Sanfilippo but the Sanfilippo Children’s Foundation is trying to change exactly that by raising awareness and much-needed research funds.
Their vision is to: fund medical research so a cure can be found in time for children battling Sanfilippo today, and those born with it tomorrow.
While Isla and Jude were the catalyst for starting the Foundation, Meg and the team at the Sanfilippo Children’s Foundation work hard for the benefit of all children with the condition (including those not even born yet!) Their research strategy funds research projects that show potential to halt disease progression; repair damage caused by the condition; or improve the quality of life for children suffering from Sanfilippo.
Support for the Foundation began in Megan’s local community of Freshwater in Sydney but has spread to all corners of the country and in fact the globe, as has the group’s engagement with the scientific community, other patient groups and pharmaceutical companies worldwide.
Two years ago a team of 7 runners relayed from Melbourne to Sydney. This epic journey was kick-started by key supporter of the Foundation, John Burgman and was called the ‘Sanfilippo 1000 - Big Feet for Little Feet’.
They call it ‘people-powered medicine’ – everyday people moving their bodies to make a difference!
This year the Foundation has rebranded and has partnered with Rapid Ascent to call this collective fundraising push the SF Super Series which also incorporates a cycle event in Bowral NSW.
The Foundation is constantly moving, and mapping out new projects that could have a broader impact to the quality of life of Australian children with Sanfilippo through medical research. You too can help make this happen!
It is through the support and generosity of ‘people who move’ – like YOU – that is delivering hope to Australian families, and it is this contribution that helps the Foundation accelerate its mission to fund medical research so a cure can be found in time for children battling this catastrophic condition today and those born with it tomorrow.
MAKE A DONATION
If you are inspired by The Sanfilippo Children’s Foundation’s mission and want to help, you can simply make a donation at www.sfsuperseries.com.au. A tax receipt for your donation will be provided following your payment and donations over $2 are tax deductible.
JOIN SF SUPER SERIES TEAM
For more information ring the Series: 1800 664 878 or email: email@example.com