Cornish Barbarians '50 VOR 50' in support of 'The Noah Jordan Foundation'

Organised by The Noah Jordan Foundation

On the 9th August 2025, in 10 gigs, 60 Cornish Barbarian Rowers and their 10 Coxswains, from around the country, will take on the extraordinary challenge of rowing 50km from Truro to Pentewen as part of the 50 VOR 50 event in support of TNJF.

Story

Our Story – 50 VOR 50: Truro to Pentewan, 9th August 2025

On Saturday 9th August 2025, we – the Cornish Barbarians – will once again bring together an extraordinary crew of gig rowers from across the country to take on our longest challenge yet – a 50-kilometre coastal row from Truro to Pentewan.

Sixty rowers. Fifty coastal kilometres. Ten Cornish Pilot Gigs. One unforgettable day.

Our 2025 Barbarians will hit the water at sunrise, rowing with teammates they’ve never met, through everything the Cornish coast can throw at them – tides, wind, and the unpredictable elements. It’ll be a challenging day on the oars, but every stroke will be for an amazing local cause.

This year, we’re rowing for The Noah Jordan Foundation, and we’re aiming to raise £10,000 – or approximately £175 per rower – as part of a wider £100,000 campaign to fund vital medical research into Alper’s Huttenlocher Syndrome – the rare and devastating mitochondrial disease that took Noah’s life, for which there is currently no treatments, or cure.

The funds will support a three-year PhD medical research programme whose work could pave the way for real progress in understanding and treating this condition – and provide hope for other families in the future.

So we row – for Noah, for progress, and for hope.

If you’re able to support us, please donate or share this page. Please support our Barbarian rowers by donating in support of their fundraisers on JustGiving. Every contribution helps us move closer to a future where no family has to suffer at the hands of these cruel diseases.

The extinction of Mito, one stomp at a time.

Thank you for your continued support.

For further details on Noah's story and the important work the charity are doing, please continue to read below.

Baby Noah leaves a 'Mity' Legacy...

Our Son Noah Kenneth Ray Jordan was born on the 5th June 2023 at Treliske, The Royal Cornwall Hospital, Truro, the second Son of myself and my wife Natasha Jordan. He was a happy and healthy little boy; he was always smiling, laughing and loved playing with his big brother Freddie.

Noah was an otherwise healthy and happy infant up until 8 months of age, when he presented with symptoms of jaundice as a result of acute liver failure. Following admission to Treliske on the 18th February 2024, he was quickly transferred to the nearest paediatric specialist centre at Birmingham Children's Hospital where following neurological progression a diagnosis of a rare Mitochondrial disease was obtained, namely, Alpers-Huttenlocher Syndrome. Mitochondrial disease is believed to affect 1 in 5000 children.

The disease progressed quickly and Noah passed away one month following admission to hospital.

This awful disease, particularly prevalent in infants and young children is incredibly progressive attacking the liver and brain; causing liver failure and uncontrollable seizures, and unbelievably there is currently no treatment or cure.

Unfortunately, Noah was not well enough to be transferred back to a Hospice near his home in Cornwall and so spent his last days surrounded by his family at an incredible Paediatric Children’s Hospice in Berkshire called ‘Alexander Devine’ where he sadly passed away.

Noah died peacefully in our arms on the 19th March 2024.

Help us raise £100,000 to fund vital medical research towards treatments and a cure

As part of Noah's legacy we are raising £100,000 to fund vital medical research into Alper's Huttenlocher Syndrome, the disease that took Noah’s life. This crucial medical research will be facilitated through a three-year PHD under the guidance of our charity medical advisors, the UK’s leading Professor of Paediatric Mitochondrial Medicine, Professor Robert McFarland and Dr Laura Smith, a leading Neuroscientist with a special interest in Alper’s Syndrome. By supporting this campaign, you are helping us raise vital funds to undertake this crucial medical research, with their guidance, as soon as possible.

Noah's story in full (written) https://www.tnjf.org.uk/noah-s-story

Noah's story (video) https://www.instagram.com/reel/DATPcHBIKnD/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

BBC News (Article): https://www.bbc.co.uk/news/articles/c4gdxr18nqlo

BBC News (Radio): https://www.instagram.com/reel/DBwfM3WOlaR/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==

BBC News (Television): https://www.instagram.com/reel/DBrTLzVu-tg/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==