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I am joining the fight against Neurofibromatosis by participating in the NF Hero Challenge this August because our son Charlie has NF1
Neurofibromatosis (NF) is a cancer predisposition disorder that causes tumours to grow on the nervous system, including the brain and spine. It is progressive, unpredictable and there is no cure.
Charlie has a Optic Glioma (brain tumour) spots on the brain and spine, learning disability, cafe a lait spots, lisch nodules and the list goes on.
Living with NF is like living with a ticking time bomb. Tumours can grow anywhere, at any time. Children and adults with this disorder can lose their vision, develop untreatable brain and spinal tumours and experience deafness, bone abnormalities, cancer, learning difficulties and disfigurement. Despite the uncertainty and the pain, people with NF are brave, resilient and inspirational. They are NF heroes!
Tumours should never be a person's normal and I am proud to be fighting for a cure and fighting for Charlie.
The Children's Tumour Foundation (CTF) is the leading charity in Australia supporting children and their families with NF. NF affects as many as 1 in 2,500 births, making it more common than Cystic Fibrosis, Huntington's Disease and Muscular Dystrophy, yet sadly, awareness is lacking.
Government funding accounts for less than 2% of income generated by the Children's Tumour Foundation, which equates to less than $2 in funding, per person affected in Australia. THEY NEED OUR HELP!
I have a goal to raise $2000.00 to support the Children's Tumour Foundation's investment into research, specialist clinics, vital support services and medical trials that will help Charlie through this journey.
Please help me reach my goal by making a tax deductible donation. With our powers combined, I believe we can #conquerNF and find a cure so Charlie live his life like a normal teenager.
26 Aug 2019
Yesterday we had out NF Hero Walk and had around 270 people attend. We are so overwhelmed by the support. Why would you live anywhere else???
THANK YOU from the bottom of our hearts. We are so very grateful very everyones contribution.
129 days ago
140 days ago
146 days ago
Great work team, sorry we couldn’t get their for the walk
148 days ago
What a tremendous effort by you all. Charlie your a little legend! xx
Well done to Team Phelan onntheir amazing fight and flight with NF and the fundraising efforts.
You guys rock! X
Sorry we missed the walk
Hi team Whelan!! Well done you!! Amazing results!! Cheers to all!!
Well done Team Phelan xx
149 days ago
150 days ago
Way to go team xx
151 days ago
Have a great day today Charlie and crew xx
Good luck tomorrow Team Phelan
152 days ago
Go Charlie. You’re an amazing person doing a amazing things! Love from Tom and Claudia
Good luck with the NF walk today
Hi Charlie, Callum and I can't be at the walk but your in our thoughts kiddo
Have a great day - sorry i cant attend
153 days ago
We hope it's a fabulous day and sorry we can't be there this year.
The Kumnick's xx
Hope you have a fun successful day and weather is kind to you
154 days ago
Jules love what you do! Hopefully everyone is helping you achieve your goals! X
156 days ago
Sorry I can’t be there for this event, but all the very very best for another successful campaign.😘
Keep spreading the important “awareness message” team Phelan!!!
157 days ago
All the best
160 days ago
Make sure you finish
161 days ago
Can’t make it for the March but have a great day
Thank you for bringing this to our attention. X Phil and Al
Keep pushing x
163 days ago
171 days ago
Go Charlie + team! 💛💙
174 days ago
175 days ago
Have a great morning everyone.
Sorry we can’t make it.
178 days ago
Would loved to have come but will be in Ballarat with my exhibtion. Have a great day everyone
Sorry we cannot be at the walk but will be thinking about you! X
Sorry we can’t be at the walk but have a great day Charlie.
180 days ago
Good luck Charlie.
181 days ago
Best wishes for the NF Hero Walk, Charlie and crew!
183 days ago
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