Professor’s marathon mission for rare disorder awareness

James Edwards, originally from Carmarthen, is taking on the London Marathon to raise awareness and funds for Cure DHDDS, a charity supporting families affected by a rare neurological disorder.

Cure DHDDS supports those living with a mutation in the DHDDS gene—affecting fewer than 70 people in the world and causing progressive neurological decline from infancy.

Professor Edwards, who works at the University of Oxford’s Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, said: “This marathon place is a rare opportunity for the charity, and I wanted to do everything I can to make it count for them.”

Affectionately nicknamed the Plodding Professor, Professor Edwards has turned his preparation into a series of increasingly ambitious challenges that always ends with a pudding. He said: “Some traditions must be preserved.”

His efforts began with a 6km Inklings Challenge, connecting the graves of authors J.R.R. Tolkien and C.S. Lewis in Oxford.

He added: “Running between the tombstones of literary giants felt like a good way to add a bit of narrative tension to my training. If Frodo could walk 1,800 miles, I felt I could at least manage a bit of Oxford.”

Professor Edwards joined Instagram to share his journey and raise awareness—something he describes as nearly as challenging as running itself. Despite the humour in his posts, he is clear that the struggles faced by families living with DHDDS are far more serious.

The charity, Cure DHDDS, was founded by a London family after two of their children were diagnosed with the condition. Due to its rarity, there is limited research and few resources available to affected families.

Professor Edwards said: “DHDDS families have felt abandoned by the system. Many feel incredibly isolated and frightened for their loved ones’ future.”

His training has included a variety of themed runs, such as the College to College Plod through all 44 Oxford colleges, a riverside Top of the Thames run, and a 15-mile Plod to Blenheim Palace—his version of the marathon’s Buckingham Palace finish.

He quipped: “Fewer crowds, more sheep. Felt a bit like home.”

He has also taken on a four-minute mile challenge on the track where Roger Bannister broke the record in 1954. He continued: “Simply finishing without being overtaken by a brisk walker would count as progress.”

Professor Edwards’ journey is part of a larger effort to raise awareness for the rare disorder. Supporters can follow his marathon preparations online as he runs across Oxford and beyond.