Alness man's canoe challenge in Alaska aims to help fund research for 4-year-old granddaughter's rare disease
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AN ALNESS man will canoe hundreds of miles in the Alaskan wilderness with his son in July to help fund research into his four-year-old granddaughter’s rare life-limiting condition.
Rae Jack will spend nearly three weeks with his so David, who is a lecturer at UHI Inverness, on an unguided canoe adventure on the Sheenjek and Porcupine rivers in remote and unpopulated territory.
They took up the challenge in a bid to raise vital funds for the Foundation for Prader Willi Research (FPWR UK) to help finance its efforts to secure a breakthrough in treating his granddaughter Robyn’s condition.
David said Robyn was born with Prader Willi Syndrome (PWS), a rare disease causing low muscle tone, developmental delays and other complications.
He said: "PWS is a rare disease and FPWR UK, of which I’m a board member, raise funds for vital medical research. The prospect of life-changing treatments is genuinely round the corner.”
"One of PWS' symptoms is hyperphagia, a constant feeling of profound hunger, which develops later in childhood."
David added that there are promising treatments under trial and he hopes that Robyn will be one of the first generation of sufferers to live free from hyperphagia.
A JustGiving page has been set up to collect donations and all the money raised will go to the charity – none will be used to fund the trip.
Rae lives near Alness and is a seasoned canoeist and adventurer. He has been planning the trip for years and David got on board about seven months ago.
“We’ll be canoeing the 288-long Sheenjek River from its source in the Brooks Mountain range in Northern Alaska," said David.
"We will also canoe a section of the Porcupine River which will take us to our eventual destination of Fort Yukon. We won’t pass through any settlements during our route and will be in true wilderness for the duration of our trip. This is an unsupported trip and it’s just the two of us.”
They will leave Scotland for Fairbanks, Alaska on Thursday, July 6 and with their second-hand canoe will be flown in a small aeroplane to the starting point. They plan to paddle for as many full days as possible and it is expected to take them nearly three weeks to complete their route.
David added: “I have river and sea kayaking experience, albeit this is my first major trip on an open canoe. I do however have experience of expeditions gained in the mountains both in Scotland and overseas. My father has completed four Arctic canoeing expeditions.
“He wanted to complete this and had planned on doing it a few years ago but Covid-19 got in the way. From my perspective it seemed like a unique once in a life-time opportunity. Thankfully, my wife allowed me to go with him!
“I’m looking forward to doing something unique in a special part of the world, to spending time with my dad and to raising awareness about my daughter’s condition. My one concern about the trip is all the mosquitoes, I’m told it’s them and not the bears that we really have to worry about!”
David has been encouraged by his supportive colleagues at UHI Inverness, and Ross Pattison in the Sports department has given him vital sports nutrition advice.
Professor Chris O’Neil, principal and chief executive of UHI Inverness, said: “I never fail to be amazed and humbled by our talented and compassionate staff. David’s adventurous spirit and his dedication to a cause that means so much to his family is inspiring, and a great example to our students. We wish him the very best of luck and look forward to hearing all about it on his return.”
You can follow the Alaskan adventure at fpwr.org.uk/sheejek-river-equipment-and-medicine-for-a-remote-expedition/
