Growing up and living with Neurofibromatosis (NF) was isolating at its finest. Despite being the most common neurological genetic condition, the only other person I knew with NF or who had spots and tumours like me, was my Dad. There were no support pages or ways to connect with others who shared the same diagnosis. The kids at school didn't understand and so, not only did I look physically different, I felt internally different.
I can't even count the hours I spent looking online in search of people who publicly and proudly declared their NF diagnosis.
For me, finding the Children’s Tumour Foundation (NF) was life changing. They are the glue that binds NF families together. They are a platform to give us a voice and are educating a community who, for the most part, do not know NF exists.
And now, I am proudly completing an internship with them and have registered for the NF Hero Challenge which kicks off next month.
For many people walking 10,000 steps a day is a challenge, for me I am recovering from my third brain surgery after having yet another brain tumour removed.
I have lost an entire lobe of my brain to this condition, have suffered debilitating seizures and have had more tests and surgeries than I care to remember.... and I am just one of the many NF Heroes that you are supporting by fundraising in this campaign.
For me, fundraising and sharing my story is my challenge and I am hoping that anyone reading this blog will be inspired to register and take on a challenge of their choosing to help raise funds, awareness and understanding of NF.
NF causes tumours to form on the nerve cells, including the brain and spine, but it can also cause disfiguring tumours that alter a person's appearance. In a world that is focused on physical appearance as a marker of "worth", the need for support for NF sufferers is vast. Too often people with NF are ridiculed, accused of being "contagious" because they have external lumps on their skin. They are left behind in school and fall between the cracks because they learn differently and all of this can lead to mental health issues, anxiety and all too often, people with a genetic disorder can feel a deep sense of not belonging.
Can you imagine having to battle tumours every day, but also having to fight for understanding in every sector of your life? Or how it would feel to have little understanding of your disorder, but a lot of judgement? Because I can. I have lived it.
The NF fight extends far beyond tumours and in to a world of marginalisation and a need for acceptance.
This fundraising campaign is significant, because it is asking people to stand beside their NF friends and family members, to be their hero and start a national conversation about the condition.
It is FREE to join and open to anyone - so there is no reason not to participate. It's as simple as committing to a challenge, registering and sharing a link on social media. Every dollar raised truly makes a difference for a small not for profit organisation like the CTF. You would be surprised who in your friends list would donate $5 and how quickly those donations add up.
In a time that is uncertain and daunting, it is also providing an opportunity for people to take control, show 2020 who’s boss and at the same time, be a champion of a cause that needs external support.
This matters, because families and individuals with NF, like me, are exhausted from fighting and we need your help.
The CTF are fighting for funding to run mental health programs, information webinars and supporting world class medical research into NF. They are doing this through a pandemic and they are creating it all from nothing, because prior to their organisation, there was no support for people with NF.
This is my first opportunity to connect with our community as a member of the CTF and I am asking you to be proactive and not just assume that someone else will do it.
Every action you take has a ripple effect, and by sharing this campaign or my story, one more person might register and their friend may then register... and so on and so forth.
The NF HERO CHALLENGE is how we create change. So, what is within your power to conquer NF?
REGISTER FOR THE NF HERO CHALLENGE