The vision of the Sanfilippo Children’s Foundation is to fund medical research so a cure can be found for Sanfilippo Syndrome – a rare genetic condition that causes fatal brain damage. It is referred to as a ‘childhood disease’, because most patients never reach adulthood. The aim is to find a cure in time for children battling Sanfilippo today… and for those born with it tomorrow.

Three years ago, the Sanfilippo Children’s Foundation had 10 runners participate in the Pub2Pub to raise funds for what was then a fledgling Foundation. This year the Foundation has already recruited a Team of 110 participants for their ‘Big Feet and Little Feet’ Team in the Pub2Pub, which forms part of their ‘SFSuper Series’. This number includes a number of ‘Virtual Runners’, which count as ½ a full participant.

The ‘SFSuper Series’ of events includes a trail run, a cycle, an ocean swim, a CrossFit challenge AND the Pub2Pub. Events have been selected to challenge and inspire, but also because they provide the most fun and are achievable for everyone – no matter how fit or experienced. Participants can do just one event or challenge themselves to complete the whole series, all the while raising much needed funds for the cause.

In the three years since they first appeared in the Pub2Pub, this local charity has directed almost $3 million towards Sanfilippo research and funded 12 projects including a potentially life-saving gene therapy clinical trial at the Adelaide Children’s and Women’s Hospital in Adelaide.

The Foundation was started by Freshwater mother Megan Donnell, whose children, Isla and Jude, are both battling Sanfilippo. Megan and Isla and Jude’s father Allan Donnell will take part in the Pub2Pub, as will relatives and other local families who are right behind this initiative.

For example, Bella and Benny Lance, who have known Isla and Jude since they were babies, are running to raise funds for their friends. Meg Garrido (an ultra-marathon runner) is also participating in the Pub2Pub alongside her daughters Violet and Jasmine, both of whom were in the same school class as the Donnell children last year.

Eli and Natalie Chalhouy (just 8 and 6 years old respectively), will walk alongside their brother, Peter who is battling Sanfilippo. Peter can no longer walk and can’t talk, regularly spending time in Manly at Bear Cottage. Natalie herself had cancer (Wilms Tumour) two years ago and underwent chemotherapy treatment. This is one brave family.

Other Sanfilippo families taking part in this year’s Pub2Pub include Michelle and Chris Morrice, who will travel with their son Alec all the way from Brisbane for the Pub2Pub. 11-year-old Alec is still able to walk, but Michelle hopes to push him in a stroller for the bulk of the event, then have him run with her as they cross the Finish Line.

Three year old, Lucas Tiefel, who lives in Orange, was diagnosed with Sanfilippo just last year. His family has joined the Foundation’s fight to find a cure and will be bringing a contingent with them from Country NSW to participate in the Pub2Pub.

The Sanfilippo Children’s Foundation represents exactly what the Pub2Pub has been about for all of its 26 years… the coming together of the community to raise funds to help others in need. While there is currently no effective treatment or cure for Sanfilippo Syndrome, there is hope… and you can help by joining the ‘Big Feet and Little Feet’ Team and participating in the Pub2Pub on Sunday week, August 26.

The Big Feet and Little Feet Team is supported by local businesses and sponsors including Manly retailer Humphrey’s and Col Crawford Motors BMW.

To enter or for more information, visit: www.pub2pub.com.au
Website for Reference: https://www.sanfilippo.org.au/