Dialog Box

Brave Heart

Join Team
Share this page

$6,480

raised so far

100%

of $5,000 goal

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!

My Updates

30 May 2024

We are one day out from the end of our mission to clock 150km and $5k. And thanks to all our our friends and family, and friends of friends and family, we have achieved our goals, plus some. A huge thank you to Nat Maccanello and the Vargassoffs for helping get those kms in every day rain hail or shine, and helping get us over $5k. And to the Mid Life Hikers for our trips to the gym when the weather was too brutal to run outside. Thank you to all who donated, it means so much to us. Big love.

13 May 2024

We are over 100km!! Thank you to Nat in Vegas and the Midlife Hikers who have helped clock up the kms.

The rain didn't stop us on Saturday morning. We hit the Gunyama Gym. 3 free pass trial at any City of Sydney gym/pool if anyone is keen to help clock up some walks/runs. Just 50km to go.

We are still a while of the $5k goal, so please do donate, every bit counts.

Team Members

Brave Heart family
$1,750
Natalie Maccanello
$1,025
Nellie Kavenagh

253.49

km
completed
completed of 150km
target distance
of 150km
target distance
of 150km
target distance
Donate