In 1993, Clive Phillips stood at the bottom of the Col du Télégraphe, a mountain pass in the French Alps, watching the world’s top cyclists tackle the climb during the Tour de France. Some 30 years and a Multifocal Motor Neuropathy (MMN) diagnosis later, Clive found himself back in the same spot. This time, he was the one who was cycling.
How did he get there? 18 months prior, Clive, along with his friends and fellow veterans Dave Walker, Frank Culverwell, Jon Ager, and Steven Shirley, began preparing for the challenge of a lifetime: riding the route of the 1955 Tour de France. As a lifelong cycling fanatic, this was the ultimate dream. The ambitious ride would take them nearly 2,000 miles over 25 days, guided by these goals: to raise awareness of MMN, connect with the rare disease community, and raise funding for research. For Clive, the journey turned out to be mental as much as physical, as he confronted and processed the experience and impact of living with a rare condition.
The months before, Clive’s training schedule consisted of 5 weeks of training, with one week off to accommodate his Intravenous Immunoglobulin (IVIG) infusions every 6 weeks. The timing is critical, as he found the treatment less effective and the infusion recovery time longer if his body was exhausted. Throughout the process, Clive monitored his grip strength to identify when he might be pushing himself too hard. Even with preparation, it was unclear whether they would complete this impossible dream. The real test came during the ride and then the recovery process after, “I don’t think I’ve pushed myself that physically hard. It was 2 months before I even started to feel like myself again, and 5 months before I got back on the bike,” between dealing with fatigue from the ride, MMN symptoms, and the mental load of managing the project.
On May 30, 2025, they set out, accompanied by a support crew including Clive’s wife Ann, as well as a filmmaking crew to capture the journey. The days were long, riding from early morning until mid-afternoon, and spending the evenings debriefing, planning, and resting for the next day. The weather was unforgiving at times, with thunderstorms and temperatures reaching 110 degrees Fahrenheit, adding to the physical toll.
While enduring a grueling physical challenge, Clive also found himself face-to-face with the realities that come with his MMN, like not keeping up with his peers as he used to and having to adapt based on the weakness due to his condition. While challenging, “It pushed me to start addressing some stubbornness, unwillingness to ask for help, and to be vulnerable,” he shares.
The team completed the seemingly impossible ride, but the story doesn’t end there. Since then, Clive has worked alongside the filmmaking crew, editing the film in preparation for a film tour. He hopes “No One Rides Alone” will encourage people to reflect on their dreams and aspirations. “Just because I can ride as I do doesn’t mean everybody with MMN can. I’m really lucky with how I responded to treatment. It’s about finding your Tour de France. Something that’s meaningful to you.” The film is meant to spark conversation in the rare disease community and beyond, increasing awareness of MMN, encouraging other patients to consider sharing their experiences, and allowing themselves to ask for help. It also captures and sheds a light on the importance of a support system, the people and loved ones who are along for the ride; “The focus is often on the person with the condition” Clive shares, “But behind the scenes, there is often one person, or others, who are quietly going about supporting that person and living every moment of it with them. They may also need a bit of help or support themselves.”
The audience can expect an honest portrayal of the Tour de MMN, including both the highlights and the challenges, as well as interviews with other patients with rare conditions such as Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Myasthenia Gravis (MG). The Tour de MMN has raised nearly $15,000 for MMN research and proceeds from the film tour will also support research.
The film premiered in Belgium on February 28, followed by showings across the UK. There are plans underway to screen the film in New Zealand, Australia, Canada, and the United States. Keep an eye out for more information.
The Tour de MMN was supported by argenx
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