Clive Phillips is to cycle a Tour de France course for awareness and research funds for a discovery akin to winning the yellow jersey.
In late 2019 the Hope cyclist was diagnosed with multifocal motor neuropathy (MMN), an ultra-rare, slowly progressive disorder where the nerves controlling muscle function are attacked by their immune system.
In Clive’s case, it has caused loss of strength and function in his left hand, arm, and foot. It gets treated every six weeks with intravenous immunoglobulin, a blood product containing antibodies that is given intravenously to patients with autoimmune conditions.
But these doses only suppress the degenerating condition. Despite three decades of research, MMN causes and a cure remain elusive. Clive set his gears to the Top of the South from Wellington in 2021 for the “better weather” and in the same year established the social enterprise Making the Most of Now to crank up awareness of his condition through cycling.
Ride for MMN excursions have raised around US$200,000 for MMN research.
For the inaugural event in 2022, Clive embarked on an 11-day, self-supported, 1130km bike-packing ride around the top of the South Island, and in 2023 battled the elements to garner around 240km on New Zealand’s longest Great Ride Trail, which is around 320km.
Ride for MMN went global last year with 86 individuals and teams setting off to collectively ride 40,000km in a month and they managed the lion’s share of the challenge distance.
The 40,000 figure represented the measurement of the earth’s circumference (40,000km) and the estimated number of people worldwide who have MMN.
Clive says the latest edition in France will be around 3300km across 22 stages from 30 May, and four friends, three of whom he served with in the British Armed Forces, are joining his cause.
British para cyclist Ben Watson and Italian para cyclist Ilaria Brugnoli are set to join the MMN promoting peloton at different stages of the 25-day journey.
Clive says the effects of his condition will be closely monitored.
“We’re starting nine days after my latest treatment, which is usually the point at which the benefits of the treatment have got me to the best I am at any point,” he says.
“My strength kind of tends to plateau after nine or 10 days, so we’re trying to take advantage of that maximum strength.
“If we need to, we’ll seek additional treatment if I’m deteriorating… it’s a case of ‘see how it goes’, but we know the specialist hospitals on the route that would be able to provide the treatment.”
Clive says the excursion also pays homage to the first British team to cycle the 4495km in the Tour de France in 1955, with the course shortened to accommodate Clive’s condition.
“As much as this is about raising awareness during the ride, connecting with people in the MMN community and raising money for research, we wanted to kind of have something that can tell the story afterwards that we can then use to further those goals well beyond the actual ride,” he says.
“1955 was the first time a team from Britain rode it, and the first time Brits finished, and as it’s the 70th anniversary of that it’s a celebration of that achievement, and I hope we can tell our story, but also the story of those riders.”
Visit p2p.onecause.com/tourdemmn to donate.
