As many of you may or may not know, my brother, Harrison, suffers from Shwachman-Diamond Syndrome (SDS).  

SDS is a very rare genetic disease which affects many systems in the body, mainly the bone marrow/blood functions, the skeleton, pancreas and neurodevelopmental challenges.

Those affected by SDS have a 1 in 3 lifetime risk of developing leukaemia.  Research into the genetics of SDS furthers understanding of the progression of blood disorders which mutate into leukaemia.  Research into a cure for SDS therefore also supports a cure for leukaemia.

This year, thanks to my daughter, Maddison, who kindly suggested the idea, I will be going 40 days during Lent WITHOUT alcohol!

A very tough personal challenge, but this cause means a great deal to me.  The more money raised for SDS UK, the more they can do to support patients and families and the vital research of Professor Alan Warren.

My wonderful employers, Sky, have generously offered to contribute £300, over and above any kind and greatly appreciated donations, to further help improve the lives of SDS sufferers.

SDS UK (registered charity no. 1164269) is run solely by volunteers and aims to fulfil the following 4 objectives:

1. Clinical care - to ensure that every patient and family who receive a SDS diagnosis gets connected to the best possible clinical team and receives a treatment plan. Supporting the development of an adult clinic and transition from paediatric to adult care.

2. Community - to ensure that every SDS patient and family receives emotional and practical support.

3. Research - to support and fund research projects with the ultimate aim of finding a cure and having multiple SDS therapies available for SDS patients. Any proceeds from research endeavours get reinvested into more research.

4. Emotional times - to ensure that every SDS family who needs to stay in hospital, gets the support to be able to stay together if they need it.

By fundraising and donating to SDS UK, not only are you helping patients & families throughout the UK who have been impacted by SDS, you are helping to save lives.

Thank you for caring and for your support.   

Adam (aka Woody!)