From the get-go, voices from the community have been included. It’s been fantastic to get to engage with experts in the field, those who are experts by their experience of living with the condition or being at risk, and community advocates.

I’ve been fighting ALS my whole career but, in an expected twist, the fight recently became personal when a close relative was diagnosed and I became a caregiver. Nothing prepared my family for the months of waiting for – fortunately negative – genetic test results. It struck me how dire the situation must be for those who don’t have expertise in the disease, and who can’t access specialists for advice. From that frustration, Light The Way was born.