Brisbane Trail Ultra is proud to announce that in its inaugural year it will be part of the Sanfilippo Children’s Foundation SESuper Series.
The SESuper Series is part of a national endurance event where you can run, swim, trail run, compete in cross fit to help raise fund to find a cure to Sanfilippo Syndrome.
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 2,000 babies are born with this neurodegenerative disease.
We are also lucky enough to have a new Charity Race Ambassador who is personally connected with the Sanfilippo Children’s Foundation joining our Race Ambassador team, Michelle Morrice. Michelle will be racing for “Hope for Alec”. Michelle is Alec’s mum. Alec has Sanfilippo Syndrome and Michelle is doing everything in her power to raise funds and awareness for the Sanfilippo Children’s Foundation and we are just so happy to be able to support Michelle.
“Our hope is for the advancement of clinical trials to help develop a treatment and hopefully one day a cure for this condition so that children with Sanfilippo can live a life that every child deserves. We hope the wider community can help spread the word and help us to make exactly this happen.”Michelle Morrice, Alec Morrice’s Mother.
The Brisbane Trail Ultra is excited to be able to do something positive to help find a cure for Sanfilippo Syndrome. The Brisbane Trail Ultra and the SESuper Series is part of a national endurance event where you can run, swim, trail run, compete in cross fit to help raise fund to find a cure to Sanfilippo Syndrome.
You will be able to run as an individual or in one of our relay teams to raise funds for research and hopefully a cure.
The mission of the Sanfilippo Children’s Foundation is to fund medical research so a cure can be found in time for children battling Sanfilippo today and those born with it tomorrow.
Born seemingly healthy, over time the brain of children with Sanfilippo gets progressively damaged. Children experience hyperactivity, sleeplessness, dementia, loss of speech and cognitive skills, intellectual disability, 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.
So the Sanfilippo Children’s Foundation created the SFSuper Series – a group of events that will challenge and inspire you no matter how fit or how much experience you start with.
Funds raised by the SFSuper Series go towards funding vital 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.
If you’re part of the Sanfilippo community, we support, encourage and help you to participate in events you may never have considered.
Brisbane Trail Ultra is giving Sanfilippo Children’s Foundation members a 10% discount code. Running and fundraising the SESuper Series means a discounted entry fee, free training plan, training sessions with world class coaches, a super supportive community of like minded runners, running merchandise, plus loads of other goodies.
In 2019, the SFSuper Series enters it’s fifth year and we’re super excited to announce that it will be one of our Brisbane Trail Ultra charity partners. We’re anticipating a large number of SFSuper Series participants in the Brisbane Trail Ultra as it promises to provide a challenging course, incredible scenery and an epic finish festival and support crew experience!