Niemann-Pick disease…is nt a disease most people are likely to have heard of but it’s so rare many doctors have not heard of it either.
Niemann-Pick disease (NPD) is a genetic neuro-degenerative condition that has devastating consequences for those who suffer from it.
The age of onset and disease progression varies from person to person, but ultimately this insidious metabolic condition affects the brain and impacts the individual’s ability to walk, talk, eat and think. At present there is no cure.
Niemann-Pick UK (NPUK) is a small charity dedicated to raising awareness, providing practical and emotional support and backing research into potential therapies and, hopefully, one day a cure for NPD.
Fundraiser Helen Beveridge of Inverness, took on the huge challenge of swimming the length of Loch Awe – 24 miles – in August to raise funds and awareness for NPD and NPUK.
Helen has a personal reason for getting involved: in 2016 her daughters Shona, 17, and Kelsie, 16, were both diagnosed with Niemann-Pick disease type C, news that has had a huge impact on her family.
Helen is no stranger to swim challenges such as this, having already swum the lengths of Loch Lomond, Loch Morar and Loch Ness, but spending more than 20 hours in the 10-14°C water of Loch Awe wearing just a normal swimsuit would test anyone. But cheered on by friends and family, she conquered the feat and to date has raised more than £4,000 for NPUK.
Just after the event, Helen said: ‘I swam Loch Awe in 23 hours, 29 minutes and 55 seconds. This successful swim completes my four lochs’ goal: longest, Loch Awe; deepest, Loch Morar; biggest by surface area, Loch Lomond, and biggest by volume, Loch Ness.
‘Thanks go to my crew and observer for seeing this swim through and to my wonderful family and friends.’ You can still donate at www.justgiving.com/fundraising/ Helen-Beveridge-swim
Helen Beveridge swimming the 23 mile length of Loch Awe.