A Race Against Time: Conaire Quinn's Journey

In the heart of Ballynahinch, 38-year-old Conaire Quinn is on a mission to secure access to a groundbreaking new drug for Motor Neurone Disease (MND) that he believes could significantly enhance the quality of life for him and his family.

Desperate Need for Change

As a proud father to nine-year-old Autumn, every moment counts for Conaire. Having recently received the treatment known as Tofersen, he is advocating for it to be made more broadly available. 'Time is not on my side,' he says, reflecting on his escalating symptoms that began during the COVID-19 pandemic.

The Symptoms That Changed Everything

Conaire's health troubles began subtly. Initially, he noticed his foot dropping while walking, a warning sign he dismissed as a sports injury. However, it soon escalated to a point where he struggled to manage stairs and began experiencing severe abdominal cramps. A pivotal moment came during a Manchester United match when he needed assistance to leave the terrace.

A Family Legacy and a Painful Diagnosis

Conaire carries a family history of MND, which deepened his awareness and urgency for a diagnosis. 'I was eager for a formal diagnosis because the symptoms were too real to ignore,' he recalls, emphasizing the emotional toll of navigating his debilitating condition.

Tofersen: A Game-Changer in MND Treatment

The new drug, Tofersen, is designed to target a specific mutation in the SOD1 gene, which is linked to the rarest form of MND. Consultant Dr. Gavin McCloskey emphasizes that this is the first significant treatment breakthrough in 30 years, a new hope for about 50 new MND cases diagnosed annually in Northern Ireland.

Prolonging Independence and Quality Time

With Tofersen, Conaire has already begun to feel improvements in his strength and mobility. 'This treatment could let me enjoy life again, whether it’s going to the park with my daughter or going on family holidays,' he asserts, hopeful that he can reclaim precious moments with his loved ones.

A Collective Voice for Change

Conaire's struggle is part of a larger campaign led by the MND Association, aiming to broaden access to Tofersen. The organization is actively pushing for legislation that will ensure more patients can receive this lifesaving drug while raising awareness through symbolic protests, such as a melting ice sculpture in Parliament Square.

Demanding Action: A Plea for Access

A petition with over 21,000 signatures has been presented to health ministers, urging the government to prioritize the distribution of Tofersen. Despite the drug being accessible to more than 30 patients through an early access program, many are being left behind due to inadequate local services for administration.

Time Is Everything

For Conaire, the fight for treatment is deeply personal. 'Time is incredibly precious. You don’t get time back,' he reflects, determined to pave the way for a better future not just for himself, but for all those affected by MND. With continued advocacy and community support, there is hope for a more accessible tomorrow.