In summer 2018 I'm attempting to swim the 25 mile length of Loch Awe, the longest loch in Scotland, to raise awareness of Niemann Pick Type C (NPC) disease in support of my two daughters who suffer from this destructive neurodegenerative disorder.  Monies raised go directly to NPUK to (1) promote research into effective therapies and ultimately a cure for this devastating life-limiting condition, and (2) provide practical and emotional support for sufferers and their families.  I will be swimming non-stop for at least 20 hours, in water temperatures around 10-14C (50-57F), wearing just a normal swimsuit, silicon cap and goggles.

Never heard of NPC disease?  Don't worry, NPC is so rare that few who are not directly impacted will have heard of the disease.  Even doctors have never heard of this very rare genetic neuro-degenerative disease, but it has devastating consequences for sufferers.  The age of onset and disease progression varies from person to person, but ultimately this insidious metabolic disease affects the brain and impacts the person’s ability to walk, talk, eat and think.  There is no cure and it is life limiting. 

Hope does exist for future cure or control through a combination of genome editing and new drugs, but funding is desperately needed for the research required.  

Niemann-Pick UK (NPUK) is a small charitable organisation dedicated to raising awareness, providing practical and emotional support and facilitating research into potential therapies and ultimately a cure.  Please take the time to look at their website http://www.NPUK.org

With your help we can see a more positive future.

Thanks for taking the time to visit my JustGiving page.