For my UK supporters: $1 = £0.79p

My name is Purdie and am fundraising to help develop a life-saving gene therapy for PKAN - a rare neurodegenerative disorder that affects as many as 3 in 1 million children each year. Children with PKAN rarely make it to adulthood and those that do, do not have a pleasant existence.

This cause is very important to me. My darling Violet was cruelly diagnosed with PKAN last year. Violet is the happiest, most joyful little girl you could ever have the privilege of knowing. Violet, along with all of the other children worldwide diagnosed with PKAN deserve the chance to live a longer, more fulfilling life. Violets genetic make up means her symptoms are currently mild, for now. We hope that the disease progression is slower than average giving more time to find a cure. However the disease has already caused her to have dystonia, and retinitis pigmentosa - meaning her eyesight is slowly deteriorating.

There is currently no cure for PKAN, but the Loving Loic foundation is raising money to fund research into gene therapy, the only possible way to find a cure. They still need $3.4million to be able to get to the stage of human clinical trials. The treatment will not only cure PKAN, but it can be used as a blueprint to help cure other rare diseases - saving millions of lives.

I will be walking 100 miles in March, and ask for you to donate anything you can to this amazing cause.

All funds raised will be donated to www.lovingloic.org where donations are being used to develop the gene therapy project. The gene therapy project has currently raised enough money to fund Phase III toxicology studies, marking a critical milestone in their mission to developing life-saving gene therapy for PKAN. Given the current timelines, clinical trials for these children may be ready to start as early as 2026.