Kirst's Brisbane Trail Ultra run for Alec 2019

I'd like to introduce you to Alec. Alec is the cutie on the left in my profile picture with one of my darling sons. Alec is the reason why in July 2019, I'm running 30km in the Brisbane Trail Ultra Run... and slogging it out for a 4th year at Tough Mudder in May - but that's another story!

Alec has 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. Alec has the ultra-rare strand of Sanfilippo, Type C, which occurs in only 1 in 1.5 million births.

The trail run in July will be a big challenge for me but is nothing compared to the challenge facing kids with Sanfilippo and their families... there is currently no treatment or cure available to families diagnosed with this devastating disease. This breaks my heart.

I long for a future where Alec and no other child suffers from Sanfilippo Syndrome. This is my Hope for Alec. This is my Hope for All Children with Sanfilippo.

Your donation will help in making this happen. 100% of your donation will 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... and if it is over AU$2 then it is fully tax deductible.

We truly appreciate your support and thank you from the bottom of our hearts.

love and peace xo