**Apple Pay doesn't work in the UK at present, please pay by card so I don't miss your donation**

18 months ago I started raising money for charity through bake sales. I went for the slow and steady, monthly bake sale technique, selling brownies and buns for just £1. I did events at work, with friend's companies and with anyone who would listen to me or buy a cake to shut me up! My rationale was simple - every penny has the potential for impact, and most importantly "I don't have a marathon in these legs". I even wrote a little article about it after my brother in law and his bff (my niece's godfather) ran a marathon to fundraise. I bought a card machine so I could sell cake and not push myself on a physical challenge. I did everything in my power to raise cash and awareness for charity from the comfort of my own home.

Well, all that is about to change...

One of my closest friends has asked me to walk 100 miles, in four days, with her this summer. This event, named "Walk the World" but known as the "Nijmegen March", in Holland, has some real significance for me. For 10 years I was part of the Team that supported the military aspect of the British Military Contingent, between 800 and 1000 personnel, who took on this challenge. I saw the heat rash, the blisters, the sunstroke and the chub rub. I've seen years where the air temperature was 42'C and years when the route flooded. I called ambulances to evacuate participants from the route! I said "I COULD NOT DO THIS". Repeatedly! Now I'm going to try.

Apparently I just needed an incentive. My beautiful niece Edith is that inspiration. Edith was diagnosed 2 years ago with BBSOAS. BBSOAS, also known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome, is a very rare neurodevelopmental disorder caused by a disruption in the NR2F1 gene. BBSOAS is characterized by a wide array of clinical features, but the most common are visual impairment, epilepsy/seizures, developmental delay, and intellectual disability.

There are only around 200 known cases in the world, and currently no cure or treatment. But there is one charity in the world trying to change that. The NR2F1 Foundation is funding research of BBSOAS in the hope to find treatment for Edith and all the other families living with the condition.

The money raised will go exclusively towards funding the NR2F1 Post-Doc Researcher at Heidelberg University. The Foundation sponsor this role at the cost of $95,000 a year to exclusively research the molecular biology of BBSOAS and the NR2F1 gene.

So I am asking for support and for sponsorship to help me achieve the unimaginable. If I were to bump into you in the street/work/real life I would likely suggest we grab a drink, so, let's pretend this message is us bumping into each other. Please can you sponsor me the cost of a coffee, a pint or a bottle of wine? Every single penny has the potential to help a family of a child with additional needs.

This really is going to be the challenge of a lifetime and having the accountability of a pot of sponsors will help me keep putting one foot in front of the other. On and on. For 100miles. In four days. Just under a marathon each day. Oh bloody hell...

Love,

Sarah

**Apple Pay doesn't work in the UK at present, please pay by card so I don't miss your donation**

Sarah KIRKMAN Nijmegen March for BBSOAS

By NR2F1 FOUNDATION

Sarah KIRKMAN Nijmegen March for BBSOAS

Sarah walks 100 miles for the NR2F1 Foundation