Words from our Founder
“These are the cold, hard facts. I’ve lost six members of my family to Motor Neurone Disease; my Grandmother, my Great Aunty, my father, my uncle, my first cousin and my sister. All died before their time and without hope of a treatment to help them”.
By the time my sister Caterina started slurring in 2016, in the kitchen that day, we knew exactly what to expect. She was the sixth member of the family to be diagnosed but one of the first in our family, along with my cousin, under the familial C9orf72 gene mutation. Before that, for 22 years, we lived in the dark about what was happening to our family. We knew that there was nothing that could be done for Caterina. We knew that she would gradually lose neurological control of every part of her body, except her eyes, that, fully alert and alive inside her mind, she’d become locked in an unresponsive, broken body until she could no longer swallow or breathe.
We knew that riluzole, the only approved drug for the treatment of MND, the very same drug used to treat my late father just under twenty years previously, might, at best, give her 3-6 months more time with us. She died two years later.
I started Racing For MNDi to help find answers. There’s still so much we don’t understand about this horrible disease and it continues to take lives with unimaginable cruelty. Philanthropy is driving real change and real impact in the MND world. We may not be a huge organisation, but I have no doubt we have the power to bring about life-changing treatments in my life time.