What do we mean by Raising Awareness?
It’s not just about fundraising although let’s be honest, we can’t do what we do without it. It’s about getting our message across to as many people as possible. Getting a conversation started about childhood brain tumours and making people aware that for the rarest of tumours there is very little funding and consequently more tumour related deaths.
Rare Brain Tumours, like DIPG, are some of the cruelest cancers, frequently taking away sight, hearing, co-ordination, speech and ultimately the ability to swallow and breathe.
Kiera (pictured) was a happy, fun loving girl until a brain tumour struck her life. Over the course of her treatment she had to learn to walk several times and learn to talk a number of times too. Tragically Kiera died a little while after this picture was taken.
For many parents a diagnosis of a rare brain tumour means the end of family life as they know it.
In the case of the founding trustees of Joss Searchlight, being told ‘it’s Disney Land Time’ by the consultant was the end of our world, the end of our separate careers and the start of a world where every day we lived in fear that it would be the last for our son, Joss.
Raising awareness allows parents to talk about this cruel disease openly and for people who haven’t been affected to get some understanding of the need to research cures and treatments.
Awareness and Social Media
Social Media, whether Facebook, Instagram, Twitter or any of the other channels available is a great way to spread the word.
During certain months of the year cancer charities are very active at promoting their cause as it’s an ideal way of galvanising support, highlighting the work we do and raising funds.
Help Joss Searchlight find a cure for some of the rarest brain tumours and give suppport to families
Fighting to make all brain tumours curable
“Be Bald Be Proud!”
Mikayla’s amazing motto.
Mikayla was diagnosed with a rare and inoperable brain cancer (a Ganglioglioma) when she was 4 years old. Ganglioglioma is a rare brain tumour with both glial cells (responsible for providing the structural support of the central nervous system) and neuronal cells (the functioning component of the central nervous system). Ganglioglioma is a low-grade glioma, i.e. it is cancerous but slow growing.
Joss Searchlight met Mikayla when she was just 6 years old. She’d returned to school following a round of chemotherapy which caused total hair loss. Mikayla wore a wig. Mikayla decided to address the issue of losing her hair to avoid being jeered at. On her first day back Mikayla told us that she removed her wig and said to her school friends ‘I’m bald, right. I’m bald because of my chemo. I want to tell you this now, I don’t want to tell you this later” . It was such a brave thing to do and it helped Mikayla’s class mates to accept Mikayla’s hair loss and never jeer at her. Mikayla’s return to school was certainly eased by her communication about her issues.
Her mum, Natasha, said: “Following the diagnosis Mikayla was quickly started on chemotherapy and we have had to do six different rounds of it because the tumour just kept growing”.