SOFT UK was started to provide a much-needed support network for children and families affected by Pataus' and Edwards' Syndrome and related disorders. Since its humble origins almost 30 years ago, SOFT UK has grown into a much larger organisation run by families for families.

Ninety percent of the volunteers and staff team have a link with Trisomy within their own families, helping to alleviate the isolation that comes with a Trisomy diagnosis.

On 4th May 2000 my world was turned upside down when my beautiful and much wanted baby girl Grace was born asleep with Edwards Syndrome. A wonderful bereavement counsellor at the RVI Hospital in Newcastle found SOFT UK for me and there the journey started. For many years they supported me as I struggled to come to terms with my loss and more recently I have done all I could to support them in return. Last year I attended a Family Day and received a Community Hero Award for my fundraising 🌈 I also had the chance to meet children and families who have been supported by SOFT UK. Please support me in my madness once again during 2024 by sponsoring me to run LLHM and Great North as well as buying cushion covers etc or coming along to one of my events.