Heather Couch
Razzle Dazzle - Swing Sisters Speakeasy!
Fundraising for SDSUK
Story
SDS UK supports people affected by Shwachman-Diamond Syndrome (SDS). The charity connects and supports families, patients, and medical professionals. It promotes access to health and educational services and resources.
Shwachman Diamond syndrome is a complex condition that has a serious effect on the lives of people with the condition, most of them young, and their families. It effects around a total of 1,200 patients in the UK and Europe and the average lifespan is 40.
Among the challenges it poses are digestive problems, failure to thrive, developmental delay, liver disease, learning difficulties, skeletal abnormalities, compromised immune system and greatly increased incidence of myelodysplastic syndrome and acute myeloid leukaemia. It is, however, so far almost entirely lacking in effective treatments.
In the UK, we are fortunate to have a talented and committed research team in Cambridge that is advancing our knowledge of this disease and is seeking out new treatments. In support of this research, SDSUK is instituting a UK SDS Registry to better understand the natural history and biology of the disease and to make patient samples available for research into the condition.
It is crucial for us to raise funds to further this research programme and to support the lives and care of the patients who suffer from this syndrome.
Thank you to anyone that will be joining us on the night - its going to be a lot of fun and a special thank you to my wonderful Swing Sisters, supporting acts and https://bottleandbowler.com for hosting our event.
