A veteran with a rare disease was joined by his friends to cycle the 1955 Tour de France route, making a sports documentary to raise money and awareness for his disorder.
Clive Phillips has Multifocal Motor Neuropathy (MMN), a rare disorder where his immune system attacks his motor nerves. This makes it hard for the nerves to send electrical signals that move the body.
One of his symptoms included having the hand strength of a healthy 90-year-old, prior to treatment.
Less than 1 in 100,000 people suffer from MMN and it is often misdiagnosed as Motor Neuron Disease (MND) or other similar conditions.
Flipping the acronym, Clive is also founder of Making the Most of Now (MMN), a healthcare and patient advocacy for people with rare diseases. He worked in partnership with Silvereye Films to make the film “No One Rides Alone”.
The film sets out to prove that someone with MMN can take on such a colossal challenge.
Clive is joined on the cycle by fellow veterans, Jon Ager, Frank Culvervell, Steve Shirley and Dave Walker.
Along the journey they also had Paralympians Ben Watson and Ilaria Brugnoli cycle alongside the group.
The film is currently touring in the UK, to begin the fundraising for Inflammatory Neuropathies UK and GBS/ CDIP.
It showcased in Curzon Cinema, Sheffield on Thursday 12 March which fellow cyclist Mr Walker was able to attend.
Mr Phillips said that the best part of the tour so far has been creating a sense of community especially when ‘having a rare disease can be so isolating’; one screening had three people with MMN present.
A major theme of the documentary was ‘giving people the pleasure of being able to help you’ this was something Mr Phillips clearly found difficult during the challenge and still after.
He said: “I don’t want to be the first person going actually, I am struggling. Because naturally you don’t want to slow everybody down, you don’t want to be the weak link.
And I had to and that’s probably my biggest lesson, that I need to be really honest about where I am at.”
After the screenings, Q&A sessions were held giving the audience a chance to ask questions both about the rare disease and process of filming the documentary.
When asked about his initial reaction to Clive asking him to partake in the challenge, Mr Walker, said: “It sounds like an interesting adventure and what a great opportunity to support a mate.
Clive needed my help, so it wasn’t something I can say no to.”
The UK tour of “No One Rides Alone” comes to an end Wednesday 18 March, before the film begins screening in Australia and New Zealand and then the USA.
To watch a trailer of the film click here.
