In a heartfelt plea, Conaire Quinn, a 38-year-old father from Ballynahinch, is urging for broader accessibility to Tofersen, a revolutionary treatment that could offer him precious time with his family as he battles a rare form of Motor Neurone Disease (MND). With his daughter Autumn, just nine years old, time is not on his side.

Quinn, who recently received his first dose of Tofersen via lumbar puncture at Altnagelvin Hospital, recalls first noticing the decline in his health during the pandemic. He describes moments of stumbling while walking and struggling to climb stairs, ultimately seeking medical help after a frightening incident at a Manchester United match.

What You Need to Know About Tofersen

Tofersen tackles MND caused by a specific mutation in the SOD1 gene, and it's hailed as the first innovative treatment in three decades. Consultant Gavin McCluskey notes that there are approximately 50 new MND cases in Northern Ireland annually, but access to this cutting-edge drug is currently limited.

"This is a new class of treatment aiming to reduce the harmful impacts of the abnormal gene, providing hope that it can slow disease progression," explained Dr. McCluskey. He believes this marks a pivotal moment in the fight against MND, offering the possibility of improved outcomes for patients.

A Life-Changing Opportunity

Quinn has already experienced notable improvements in his strength since starting the drug. He dreams of taking his daughter on holidays and enjoying simple outings to the park, wishing to avoid the rapid progression of his symptoms that could compromise these precious moments.

“This treatment isn't just a breakthrough for me; it could change the future for my family and others facing this disease. If I succeed in getting this treatment, it sets a pathway for others to follow,” he stated, brimming with hope.

Join the Fight for Access

The MND Association is actively campaigning to make Tofersen more accessible. They have highlighted the urgency of the situation with a mesmerizing ice sculpture in Parliament Square that portrays the struggles of those living with MND.

A petition with over 21,000 signatures was recently submitted to MP Karin Smyth, urging the government to expedite access to this essential treatment. While around 30 patients are currently benefiting from an early access program provided by Biogen, many others are left in limbo due to the lack of local services to administer the drug.

For Conaire Quinn, it’s clear what matters most: "Time is precious. That’s the strongest message I've learned in the past few years. You can’t get time back."