A rare genetic condition affects just 1 in 40,000 people in the UK
As a family business with a heritage stretching back over 170 years, our staff and many long standing customers are considered extended family. With this in mind, we were touched to hear of the plight facing the Hopps family who bought a kitchen from Spillers last year. Frank Hopps sadly suffers from Kennedy’s Disease, sometimes referred to as X-Linked Motor Neurone Disease. This rare genetic condition affects just 1 in 40,000 people in the UK, including Frank and his two brothers.
Symptoms usually start in middle age, with muscle wastage and speech difficulties becoming apparent. Frank was a successful commercial pilot and family man, but the prospect of a very different future now faces him and his family. Without a cure, confinement to a wheelchair is a distinct possibility as the disease progresses.
As research into Kennedy’s disease remarkably receives no government funding, Frank’s wife Kate decided to set up a charity (registered March 2015) to help raise much needed awareness and funds. With the help of her wonderful trustees and supporters, KD-UK has been able to donate £35,000 to University College London to carry out vital research. The total so far has been raised through small scale events such as suppers and theatre productions, sponsored half marathons and cycle rides across Europe.
Kennedy Disease fund raising event
UCL need at least £100,000 each year to continue working on finding a cure, so the next fundraiser is never far away. A lavish dinner, charity auction and raffle is being held on May 21st at Sunninghill School in Dorchester. Some of the amazing items include a glider flight with a double world champion pilot and a limited edition print by Sheree Valentine Daines. Sheree has been commissioned to paint The Queen with her horses at Royal Windsor for her 90th birthday. If you would like to attend the event, tickets are £50 each and can be purchased via Kate (firstname.lastname@example.org). Alternatively, if you’d like to find out more about KD-UK in general, visit www.kennedysdiseaseuk.com.
On behalf of everyone at Spillers, we wish Frank and his family all the best and we’re keeping our fingers crossed for a cure in the near future.