Done anything really worthwhile today?

February 29th, the day women can propose to men? Really, do we really only get 1 day a year? Go on girls break the mold and do it on the 4th or the 21st for all that matters! I’ve had masses of emails today from retailers suggesting how I might like to spend my money on this extra day of shopping in the year. I think I’ll decide that thank you very much!

So who is using today for raising a positive message. I’ll tell you who. Rare Disease Day, an awareness campaign to promote the charities and organisations that support families of those with rare diseases. The ones that we don’t hear a lot about, the ones where funding is little and the families affected are working tirelessly to find answers, support each other and raise funds for further research.

NPUK3

 

There is one in particular I want to tell you about. Niemann-Pick UK, a charity that supports families affected by Niemann-Pick diseases.   Sam Evans is 8 and goes to primary school in Leeds. Sam has Niemann Pick Type C. In the UK about 100 people are affected by Niemann Pick diseases. Children diagnosed develop a form of childhood dementia and are not expected to live beyond their teenage years. Families literally have a childhood to live a lifetime.

Niemann Pick UK (NP-UK) helps affected families to survive and thrive and works with researchers to develop treatments.

NPUK

Sam’s Mum & Dad dedicate a huge amount of their busy lives supporting NP-UK and this spring they and 25 of their friends will be taking part in the Major Series at Bramham Park in Leeds. Major Series? Mud, obstacles and 10k of running, before most of us have had our breakfast on a Sunday morning. www.justgiving/samsstenchwarriors is a far better way to spend a few extra pounds on our ‘Extra day of Shopping’ sponsoring this crazy brigade as they wade through mud to support families like Sam’s. 70070 – text SASW77 £5, £10 or £20

Untitled-3

Raise the voice of rare diseases today www.facebook.com/rarediseaseday if you have children, are a grandparent, work with children, or have children in your family, you will know someone affected by a rare disease.

 

Use the 29th of February for something really worthwhile. x