In a heartfelt appeal, 38-year-old Conaire Quinn from Ballynahinch is fighting for wider access to a groundbreaking treatment for Motor Neurone Disease (MND) that he hopes will allow him to spend more quality time with his family.

As a father to nine-year-old Autumn, time is a precious commodity for Conaire, especially as he grapples with a rare form of MND linked to the SOD1 gene. He recently underwent his first lumbar puncture treatment with the revolutionary drug Tofersen, which is currently under evaluation by the National Institute for Health and Care Excellence (NICE) in the UK.

Conaire's symptoms began to manifest during the pandemic, with troubling signs like foot drop and severe fatigue. His condition escalated to the point where he needed assistance even at a Manchester United match, leading to his diagnosis.

He describes the moment he learned about his condition: "They said straight away that this was a neurological thing. I came out thinking it was a sports injury but I ended up needing a crutch and I’ve had it ever since.” A family history of MND increased his anxiety about the diagnosis, but he ultimately sought confirmation knowing the impact it could have on his life.

Tofersen represents a significant breakthrough, as it is the first new treatment for MND in over three decades, capable of slowing disease progression by targeting the underlying genetic abnormality. Altnagelvin Hospital consultant Dr. Gavin McCluskey noted that while approximately 50 new MND cases arise each year in Northern Ireland, access to this innovative drug remains limited.

Dr. McCluskey added, "This new treatment changes the narrative for MND, potentially affecting progression and leading to fewer symptoms. It's an exciting time for patients like Conaire who are in desperate need of hope.” Conaire himself has already experienced positive changes, stating, "I’m feeling a dramatic difference in my strength in my fingers, hands, and legs, which is crucial for my interactions with my daughter. This could mean the difference between going on family holidays or being unable to enjoy those moments.”

Conaire emphasized the importance of access to Tofersen, not just for himself but for countless others affected by MND. He remarked, "If I’m trailblazing this treatment, it opens a door for others to see what’s available and how they can access it.”

Meanwhile, the MND Association is spearheading campaigns to ensure Tofersen becomes more accessible and that sufficient trained staff are available to administer it. Their efforts include a powerful visual protest, featuring an ice sculpture in Parliament Square, symbolizing the urgency and fragility of life with MND.

With more than 30 patients currently accessing Tofersen through early access programs, the MND Association highlights that many others without local services are being left behind. They have collected over 21,000 signatures on a petition urging the government to act quickly and provide this desperately needed medication.

For Conaire, who is acutely aware that "you don’t get time back," the fight for wider access to Tofersen is not just about himself—it's about ensuring that every precious moment with his family counts.