We would like you to meet 13-year-old Joshua, who looks like any typical teenage boy from the outside. But as his dad Jo has shared with us, Joshua has had anything but a typical start in life.
From being misdiagnosed 16 times by doctors, to falling behind his peers in school, to not being able to make friends due to his delayed communication skills, Joshua’s journey with Neurofibromatosis (NF) is all too common.
"Having NF affects my learning. I have trouble writing and understanding my teachers, and I find it hard to concentrate in class.
I don’t talk to anyone about having NF because I find it hard to explain.
It makes me feel very lonely, which is why I want more people to know about it."
13 years old, NF Type 1
Make your tax-deductible donation before 30 June and it will be matched up to $50,000 by our Ambassadors Eddie and Melanie Listorti.
Eddie & Melanie have been inspired by the stories that have come #outoftheshadows during May's NF Awareness Month, like Joshua's, and wish to encourage others to give by matching donations.
Conquering NF is about more than just research
At this time of the year, the Children's Tumour Foundation's focus turns to planning the next 12 months of activity.
Our target is to raise $100,000 by 30 June 2021, which will go towards providing:
- phone counselling,
- NF Connect support groups,
- individualised NF Teacher Toolkits,
- quarterly 'talk with an expert' webinars,
- a 'Tuning into Kids' 6-week parenting program,
- NF family camps,
- individual and group advocacy, and more.
Your tax-deductible gift before 30 June will allow us to deliver these programs to both adults and children at all stages of their journey with NF.
Campaigns like our recent 'Let's bring NF out of the shadows' for NF Awareness Month are so important.
By sharing stories about living with NF, we are raising awareness and understanding amongst the general community, aiming to reduce the time to diagnosis, and advocating for better health outcomes for those living with NF1, NF2, and Schwannomatosis.
Make your gift before 30 June and help support the growing number of children and adults being diagnosed with NF.
So, my son ended up being diagnosed with NF1 when he was about 9, and the years it took to get this diagnosis has harmed him immensely as he didn't get the support he needed early on.
He has an intellectual disability because of NF1 and is about 3-4 years behind his peers at school. It's also made him socially isolated because of his inability to communicate with his peers.
I am still deeply hurt that there is a lack of understanding about NF1 in the community."
As the combined voice for the NF community, we can be powerful.
We want to help all children and adults living with NF to conquer it, physically and mentally; to be understood and supported.
We exist to provide a pathway from fear to hope, to empower both kids and adults with knowledge, access to experts, and support at every stage of their journey.
Your gift today will help us be there for the growing number of families diagnosed with NF, like Jo and Joshua.
"I contacted CTF as I wanted Joshua to have access to a support group of kids his own age.
The CTF's work has helped my son not feel so alone with NF1 and has been amazing in empowering him in his journey with NF1."