Rare Disease Day 2025 social media campaign
#RareDiseaseDay falls on my birthday each year: 28th February. It’s really important to me to continue raising awareness of leukodystrophies and other rare diseases, so I took part in a social media campaign for Alex TLC to briefly share how it’s challenging to live with a long-term ailment. Like I wrote there — it is NOT a life sentence. 🧠🧬
Introducing ‘Snowfox’, my new creative writing project
I have at long last launched a creative writing project. This is something I’ve really wanted to do for a while now but ironically enough could never find the right words. Included are a small collection of new entries entitled “Apollo”. It’s about things that have stuck with me over the last decade of my life, some of which are based off ideas and early drafts that have existed for some time now.
My AMN story so far (July 2024)
I recently shared my experience of being diagnosed with AMN in my early twenties with Alex TLC - the charity that represents me and many other people up and down the United Kingdom who have leukodystrophies. It was important to me to be transparent about how it started to present itself, what’s transpired along the way and some of the things I’ve learned from the whole shebang in the hope that it might be of use to someone in a similar position, as well as to raise some awareness around it too.
“Lost Now Found”, a collection of short stories from the past
The following is something I wrote maybe seven or eight years ago over the course of a couple of evenings. It describes the journey of a kid who leaves his home in the middle of the night to go on a bit of an adventure.