For every tomorrow
Duncan
Campbell's Story
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Why We Fight for Better Treatment Access
Duncan Campbell was 27 living his best life with his career and social life full of hope when diagnosed with glioblastoma in February 2021. We learned that on average, he had around 14 months to live and he grieved the “theft” of his future.
Despite poor prognostic features he lived 3 and half years until August 2024. And every extra month, every extra day, mattered.
Dunk was a captain of his rugby team, a keen traveller, a happy social person and making ends meet as gas boiler engineer that supported his passion for acting and poetry. In August 2023, even as recurrence stole his vision and memory, he performed eight sell out one-man shows at the Edinburgh Fringe Fesitval about his life, his diagnosis and mental health struggles. Despite the topic it was delivered full of wit and was all laughs no tears.
By the end of his show’s run, his vision had deteriorated so badly he couldn’t see the prompt cards his mother held up from the front row. She had to call out the words. It became part of improv of the show. What the audience did not know was that by the last days of the run he could hardly see at all.
Two weeks after his final performance, Dunk had a massive seizure, was unconscious for a week and based on new imaging his doctors told his family he had at most two weeks to live. The timing was made worse as he had been accepted for a sonodynamic trial but had to withdraw. But Dunk pulled through, his doctors were wrong, he fought back and the team in New York re-wrote the inclusion criteria as he now had advanced extensive recurrent bilateral disease.
It was uncertain whether he was fit to travel, insurance wasn’t available. In December 2023, Dunk and his family headed to New York over Christmas and New Year to try something that had good science and represented hope. As a trial it was only at a safety dose, not the best guess of the clinicians, there was no alternative.
Before the treatment, Dunk could barely walk 100 metres and was stopped by pain. He had lost most of his vision and was using a white stick and took his mother’s arm when walking. He stayed cheerful, there was hope.
After just one session of sonodynamic therapy, he improved. Unlike all conventional treatments the treatment didn’t make him ill, didn’t immuno suppress, nor give him ulcers or tire him, his only issue was trivial pain from the temporary pins used on his forehead to locate the navigation devices. He gave a happy interview to his instagram followers from Central Park. Effectively no downside, he had had an 8hr anaesthetic, but woke as if he hadn’t had any treatment.
Within days he walked unaided up to five miles a day through New York which is full of obstacles. His vision improved, he could recognise playing cards quickly. He felt creative again for the first time in years, he wrote a poem for his mother’s birthday.
Two months later back in New York prior to a second session he could even run, and raced his mother to a restaurant but that night he had another seizure and had to return home. But those months he gained – those walks through New York, those moments of clarity, that time with his family – they mattered.
This is why it's our mission.
To bridge the gap between breakthrough treatments and the patients who need them. To bring a better standard of care to European families facing glioblastoma. To make sonodynamic therapy accessible so families don’t have to fly across the world for a chance restricted by irrelevant red tape in their home country.
Duncan Campbell Sr
Dunk’s father, consultant surgeon Duncan Campbell Sr, is now fighting to bring sonodynamic therapy trials to the UK and Europe. We lost, but this looked really hopeful, I am not aware of any better option but it needs therapeutic levels next time, it is obviously safe.
“Clinicians fear causing harm but this disease is like a war and patients who take part in trials should be thought of as front-line infantry,” he said. “We should give them medals.”
Dunk’s story is exactly why CureGBM exists. We’re building the European clinical pathway for sonodynamic therapy because families like Dunk’s deserve access to breakthrough treatments. Not in five years when so many have died from conventional treatment that we know is awful and inadequate. Not after endless red tape delays. But now, when it can still make a meaningful difference to people diagnosed already who are looking for a fighting chance that does not destroy what is left of their life with toxic chemotherapy.
For every tomorrow. 💜
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