The daring riding feat of rare disease patient advocate Clive Phillips will come to the big screen in the movie No One Rides Alone in Nelson this week.
The former British army solider, based in Hope these days, suffers from multifocal motor neuropathy (MMN) which affects the nerves that control the function of arms, hands, legs and feet.
So, the 51-year-old was riding into the unknown when he led a core team of five riders to re-enact the performance of the first British team to tackle the 1955 Tour de France route.
Clive had gone on fundraising rides before to promote MMN awareness, but nothing of this magnitude, and a Nelson videographer Matt Jenke covered his every move before and during the 3200km gut-buster.
“I saw Matt’s 2019 cycling film One Day Ahead which was also set in France. I googled him and found out he lives just up the road. So, we had a coffee and I pitched the idea, but then for 18 months I thought I probably wasn’t going to get the money together for it,” says Clive.
But he secured the bulk of the funding for the 25-day mission, and the filming, from pharmaceutical company Argenx, which is based in Belgium.
“There has been very little research on the impact of exercise on MMN, but now a few companies have become interested and started doing trials. It helped that three of the Argenx executives were mad cyclists and that, combined with the MMN connection, meant they supported the whole endeavour.”
Matt says he and Clive only had one tense moment during their director-athlete relationship.
“I basically asked him the wrong question at the wrong time. He was about to pass out, and I had the big camera in front of his face. You have to be careful not to poke the bear,” reveals Matt.
There was just one descent Clive passed on during the gruelling re-enactment, where they only had three rest days.
“After eight or nine hours I was dizzy and, because of the high altitude, I was losing a bit of function and having breathing issues,” shares Clive, who was utterly exhausted by the end of the 3200km.
“I haven’t ridden much since,” he quips a year after the achievement.
But he has been busy, turning marketing man, with the next challenge of getting No One Rides Alone into theatres.
It premiered in Belgium in February to mark World Serious Disease Day, was shown in Perth earlier this month, and now has five New Zealand screenings confirmed, starting with the Suter Art Gallery at 6.30pm on Friday.
It will be followed by a question-and-answer session with Matt, Clive, and his wife Anne Braithwaite, who was part of the support crew as they aim to create awareness of MMN, inspire the rare disease community and raise funds for research.
Clive’s Making the Most of Now, MMN for short, is at the forefront of the education process.
“It is all too easy to wait for another day. Hopefully doing something quite outrageous will inspire people and the film enables you to keep telling the story,” concludes Clive.
Matt describes the doco as a doozy after spending hundreds of hours filming and then editing No One Rides Alone.
There were 10 rough cuts before the final one hour 40-minute product was finalised.
“Tauranga videographer Aaron Smart and I were shooting from dawn to dusk this time last year and there were a few hairy moments along the cobbles. It turned out it was quite difficult to film on the back of a bike,” says Matt.
