Story perspectives

Push for Tofersen Access Grows Amid MND Crisis

9/7/2025

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Summary

Story summary

Dr. Gavin McCluskey emphasizes Tofersen's potential to slow Motor Neurone Disease (MND) symptoms linked to the SOD1 gene.
Northern Ireland sees about 50 new MND cases each year, with Tofersen accessible to one patient every one to two years.
Conaire Quinn, a 38-year-old MND patient, advocates for wider Tofersen access to spend time with his daughter.
The Department of Health notes Tofersen is under NICE appraisal and not yet commissioned in the UK.
The MND Association has collected 21,000 signatures to push for increased Tofersen availability.

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Story summary

Dr. Gavin McCluskey emphasizes Tofersen's potential to slow Motor Neurone Disease (MND) symptoms linked to the SOD1 gene.
Northern Ireland sees about 50 new MND cases each year, with Tofersen accessible to one patient every one to two years.
Conaire Quinn, a 38-year-old MND patient, advocates for wider Tofersen access to spend time with his daughter.
The Department of Health notes Tofersen is under NICE appraisal and not yet commissioned in the UK.
The MND Association has collected 21,000 signatures to push for increased Tofersen availability.