Thanks for taking the time to visit our JustGiving page. Here's our story:

Shortly after his birth, beautiful, happy and precious Asa Burnside was diagnosed with a rare and fatal genetic disease called Niemann-Pick Type A, for which there was and still is no cure or treatment.

Asa sadly passed away in October 2022, however in his short life he left an indelible imprint on so many, showing us that we can be bold and courageous in the face of adversity; that love, kindness and support have huge power; and that we should live in the moment, cherishing every second with our loved ones.

Asa’s strength and character was inspiring. His uncle, Gilbert, walked 100km in one day in Asa’s memory, raising a staggering £100k for NPUK and, along with another of Asa’s uncles (Nathan) they are about to embark on their second consecutive Great North Run, raising money for NPUK in Asa’s name.

NPUK are a Northeast charity based in Washington, Tyne and Wear, which shares knowledge and expertise, and works in partnership with other not-for-profit organisations, medical authorities and scientific institutions across the world, 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 the work of NPUK work, the public awareness of this disease would be almost non-existent.