Exeter College alumna supports global awareness of rare neurological condition

Exeter College alumna, Joanna Mason (2008, Economics & Management) has been volunteering on initiatives to increase understanding of Multifocal Motor Neuropathy (MMN), a rare immune‑mediated neurological condition she first experienced while studying at Exeter College. 

MMN is a rare disease in which specific parts of the motor nerves are mistakenly attacked by one’s own immune system, causing progressive muscle weakness. As of yet, the cause of MMN is not well understood and existing treatment reduces but does not prevent disease progression. Although individual rare diseases are uncommon, collectively they affect millions of people worldwide. Since her diagnosis, Joanna has worked to improve understanding of MMN, advocating for increased research, better patient support and new treatment options 

In recent years, she has partnered with fellow MMN patient Clive Phillips in New Zealand to help connect patients, researchers, and charities internationally. Together, they have sought to strengthen the global MMN community and accelerate progress in treatment and care. 

Most recently, Joanna supported the production of a documentary film, No One Rides Alone, which follows Clive as he undertakes a 3,200 km cycling journey around the Tour de France route while living with MMN. Premiering during MMN Awareness Month in February and on Rare Disease Day, 28 February, the film highlights both the realities of living with a rare disease and the power of community in driving positive change. Its broader aim is to promote greater equity in research, policy and clinical support for people affected by rare conditions. 

Further information about the film and upcoming screenings is available here, and Joanna shares updates on her awareness work via Instagram and through collaboration with Inflammatory Neuropathies UK.

Promotional poster for No One Rides Alone.

Joanna Mason with Clive Phillips and fellow cyclists at Col d’Aspin during the 3,200 km journey featured in No One Rides Alone.