My name is Finn Wood! I'm 11 years old and Frank Hopps, an old friend of my dads, who served as a pilot on 800, 801, 899 and 820 Naval Air Squadrons and then for Virgin Atlantic unfortunately has Kennedy’s Disease.  It’s a rare inherited neuromuscular disorder that causes progressive weakening and wasting of the muscles particularly in the arms and legs.  The disorder affects males; Frank’s older brothers have it; the eldest relies on a wheel chair and 24hr care [he can’t feed or drink himself] while the other is adjusting his house to be wheel chair friendly.  For Frank, just like other sufferers, there is no cure and while it only affects males it is passed on through female carriers of the gene.  Frank and Kate’s two girls (both friends of mine) are carriers; if they choose to have kids it is possible that their sons will get the disease and their daughters will become carriers. Little is known about Kennedy’s Disease and this needs to change.  So in March 2015 Kate set up a UK based, non-profit organization, run by volunteers and sufferers with the aim to help raise awareness and raise funds.  University College London has a small team who work solely on Kennedy’s Disease research.  However as the disease is rare there is NO Government funding and therefore fundraising is vital to provide the department with sufficient funds so more trials and research can take place.  They want to find a cure for Kennedy’s Disease, if not in Frank’s lifetime then in the girls.

So what do I need from you?  In late August my Dad and I are riding the first stage of the 2014 Tour de France (Leeds to Harrogate), some 127 miles over 3 days to raise money for the charity.  My aim is to raise £500  Can you help Frank? Wouldn’t it be great if the research was able to find a cure and prevent his girls as well as many others passing on this awful disease?

Thank you!