Supporting research into ultra rare neurological condition

This September, I’ll be running the Banbury 10K to raise money for NA Advocacy, a charity supporting people and families affected by neuroacanthocytosis (NA) syndromes.

I’m one of six siblings, and three of my brothers and sisters have been diagnosed with VPS13A disease, an ultrarare, progressive neurodegenerative condition which can affect 1 in 1million. Before this disease touched our family, I’d never even heard of it.

I’m also a mum to two young children, and I haven’t run since pregnancy sickness wiped me out with my first, nearly 5 years ago. Taking on a 10K after several years away from running will be a challenge, but not more than the challenges my family experience.

Living with an ultra rare disease can be incredibly isolating but NA Advocacy help raise awareness of a condition that so few people know about, and continue to champion research that could one day change lives.

With a condition this rare, progress only happens because of research. Every study and every discovery brings us one step closer to better treatments—and, we hope, one day a cure.

I can’t change my siblings’ diagnosis, but I can raise awareness. And I can help fund the work that gives families like mine hope for tomorrow. If you’re able to support me with a donation, however big or small, I’d be so grateful.