We set out to do an ultra charity walk/ run/ cycle in April 2020, from Kelly's hometown of Chorley to Sally's hometown of Leeds, which was postponed due to Covid. Over the last 2 years, there hasn't been an opportunity to revive this challenge.

However, as we entered the Great North Run in Sept 22, to raise money for The Nicole and Jessica Rich Foundation, we felt that we needed to do more. So, we have come up with a new challenge (or 2!). All donations already made will still count.

We want to help this amazing family, and all those working to beat battens, by raising money and awareness of this devastating condition. We will be running 6 half marathons together in the 6 months leading up to the GNR (from March 22 - Aug 22). We plan to run at least half of these together, and the others we will do at the same time, on our own turf.

We have also come up with some challenges for the kids, as they were so keen to be involved in the initial walk. They will be setting themselves a challenge every month.

What is Batten Disease?

Batten Disease is an extremely rare genetic disorder. It is inherited so both parents are unaffected carriers. Commonly referred to as Batten Disease, the Neuronal Ceroid Lipofuscinoses (NCLs) are a group of genetic metabolic life-limiting diseases which cause a progressive deterioration of the brain and nervous system. Over 400 mutations in 13 different genes have been described that cause the various forms of Batten Disease. The type that Nicole and Jessica have is called CLN2 or ‘late infantile NCL’. There are lysosomes inside every cell. Lysosomes contain enzymes that break down and recycle material in the cell. One of these enyzmes is called TTP1 and children with CLN2 either don’t have it or it does not work. When the enzyme isn’t working correctly, materials build up of lysosomes in cells and the build up of materials is associated with the damage of brain cells, and they stop functioning normally. This is when the symptoms begin…..Children will develop normally until the age of 3, then symptoms begin to show. The disease takes away children’s abilities to walk, talk , feed, they lose their eyesight, it bring on epilepsy, and children are not expected to live past the age of 12 years old.