Actor regains feeling in feet after new MND drug trial

A Belfast actor diagnosed with motor neurone disease says he regained some sensation in his feet after receiving doses of a trial drug that targets a rare FUS gene; he remains under care and is due to have a tracheostomy this month.

Michael Campbell, a Belfast actor who won recognition for a stage adaptation of Richard III, has been taking part in a clinical trial for motor neurone disease (MND). He was diagnosed in February 2023 and within a year was using a wheelchair. The trial in Dublin is reported as targeting a rare inherited gene called FUS that affects his family. After several doses of the active drug he reported regained sensation in his feet. He remains under clinical care and is due to have a tracheostomy fitted this month. Key facts: - Michael Campbell (also known as Michael Patrick), aged 35, was diagnosed with MND in February 2023. - He and his sister are participating in a Dublin clinical trial aimed at the FUS gene, which is reported as present in their family. - After about 16 months where he believes he was likely on placebo, Campbell reports that after four to five doses of the active drug he can now wiggle his toes for the first time in over two years. - He required a wheelchair within a year of diagnosis and is reported to be losing strength in his arms; a tracheostomy is scheduled this month. - A consultant neurologist involved with the service described the new movement as giving cautious optimism while noting that loss of function in MND is typically permanent. Summary: The reported return of toe movement after doses of the active trial drug is described as a small, clinically observed change and has given the actor and his family measured optimism. Clinicians involved are cautiously optimistic but emphasise that MND remains a progressive condition. Next steps include ongoing participation in the trial and the planned tracheostomy; further outcomes are undetermined at this time.