Rare Disease Day 2025

#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. 🧠🧬

Leukodystrophies are more challenging than you realise. Let me explain…

“Speaking from experience of having AMN, it affects all areas of your life. It requires you to bend and adapt in order to overcome things that would otherwise be obstacles. Persistence. Empathy. A dash of stubbornness - and perhaps most of all: humility. Practicing these tenets has allowed me to keep pushing back against it. It is not a life sentence.”

please click through to the Alex TLC website to learn more, take part and to donate — it would mean the world. thank you! ♥️