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Asa's Story

Shortly after my nephews birth, our beautiful, precious Asa was diagnosed with a rare and fatal genetic disease called Niemann-Pick Type A.

Asa has just celebrated his second birthday, however there is currently no available treatment nor a cure.

My sister Elizabeth and brother-in-law Joe are such an inspiration, teaching me to appreciate the smallest things, to face uncertainty with courage, and to cherish every precious moment.

I would like to encourage others to take notice and shine a light on this rare disease.

On Saturday 18th June I will be talking on the challenge of walking 100km from Berwick Upon Tweed to Longhorsley in Northumberland to raise money for, and awareness of this rare disease. I will be attempting to complete this challenge within 24 hours.

All donations raised will go directly to Niemann-Pick UK (NPUK)
Alongside providing support and care for those living with or affected by Niemann-Pick, NPUK provides information relating to research. 

NPUK shares knowledge, expertise and works in partnership and collaboration with other not-for-profit organisations, medical authorities and scientific institutions across the world, in order to facilitate progress towards therapeutic interventions for Niemann-Pick diseases.

Where possible, NPUK also funds appropriate research in order to improve medical and scientific knowledge and promote understanding of the diseases.

Without their work, the public awareness of this disease would be almost non-existent.

Without fundraising there is no research, without research there is no cure and without a cure there is no future. But there is hope. Where there is life, there is always hope.

"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion." says my soul, "therefore I will hope in Him.