On 29th August 2026, a group of fathers of children affected by SMA are planning a walk to the Summit of Ben Nevis in Scotland. Their aim is to raise funds in aid of the charity, but also to help spread awareness as part of the ongoing campaign to bring newborn screening for SMA, which has now been approved in Scotland & England, to the rest of the UK.

The walk is being organised by Tony Pearson, who is the Dad of Grayce, who has SMA Type 2.  Tony says;

“This isn’t about proving how tough we are. This isn’t about adventure. And this certainly isn’t about us. Our children climb mountains before they even leave their beds, they show bravery in ways that humble us. They smile through hospital appointments. They laugh while facing challenges that would break most adults. So we will climb for them, it’s about standing up and saying loudly and clearly that early diagnosis saves lives, that newborn screening matters, and that families living with SMA deserve support, dignity, and hope.”

Also taking part is Tomasz Figurski, who is Dad to 12-year-old Inga, who has two main reasons for joining the climb:

“We live in Wales, so we still need to fight for newborn screening to be introduced for every child born here. With the treatments now available, it is literally a matter of life and death for so many families who have no idea that their child could be affected by SMA.
During the climb, I also want to meet other fathers whose children are much younger, and hopefully bring them some hope and joy. After more than 10 years since Inga’s diagnosis, I can honestly say that my life – and my family’s life – is even happier and better than it was before. I don’t think I could have said that about our future 10 years ago…”

If you would like to make a donation to their Just Giving fundraising page please click here.