This May, join me in tackling 150KM for the 150 children born with NF in Australia each year!

As some of you may know, our daughter was diagnosed with Neurofibromatisis before she turned 1. It has taken us a year to come to terms with the future that may lie ahead of our darling. One in 2000 babies are born with NF, more common, but less known than Cystic Fibrosis, Muscular Dystrophy & Huntington's. 50% of NF1 patients can live normal lives, the other 50% deal with devastating symptoms which worsen on a sliding scale. NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, & spinal tumours; loss of limbs; malignancies; & learning disabilities.

We are choosing to not publicise this beyond our close friends, as NF is something our baby will have to deal with her whole life, and it will be her decision if she wants the share this with the world.

There is no cure and treatment options are limited. Every 3 days a child is born with NF in Australia, but they will need a lifetime of support.

I'm participating in Steps Towards A Cure in support of the Children's Tumour Foundation (CTF) and those impacted by neurofibromatosis (NF) in Australia. I would love you to join the cause, and give it a go too! You can simply donate direct to this group, or if you want to run or walk too for our group Brave Heart, just direct your friends, family and co-workers here to donate.

We have a goal to raise $5k to grow awareness of this condition and raise funds for much-needed research into more effective treatments – and eventually, a cure. Please support me, because together, small steps can be transformed into huge strides in the advancement of care for those living with NF. Also, many workplaces actively encourage their employees to support local charities and will match the fundraising, so don't be shy, see if they can match.

Thank you so much!