“I have a daughter and a family I wish to spend as much time with them without burdening them too much.”
07:00, 17 Jul 2025Updated 09:36, 17 Jul 2025
Conaire Quinn was diagnosed with motor neurone disease (MND) last year
A Northern Ireland dad has made a heartfelt plea to the government for access to a life-saving drug.
Conaire Quinn from Co Down says patients like him with motor neurone disease (MND) are being denied a groundbreaking new drug, tofersen, because of NHS resource constraints.
The 38-year-old from Ballynahinch was diagnosed with the SOD1 variant of MND in 2024 and is eligible for this treatment but like others, he has not received it.
READ MORE: NI woman’s challenge in memory of dad and aunt who died from motor neurone diseaseREAD MORE: Co Down couple praise palliative care team after husband’s devastating Motor Neurone Disease diagnosis
Access to the drug, the first effective new MND treatment for decades, has become a lottery with people unfairly missing out despite urgently needing the treatment. Tofersen has been shown to slow, and in some cases, halt progression of symptoms in people living with a rare form of MND caused by a variation in the SOD1 gene.
Conaire was speaking ahead of events in London today to highlight the devastating impact of the disease. An eye-catching ice sculpture will be unveiled at Parliament Square as part of the MND Association’s Prescribe Life campaign.
The life-sized structure will melt in the summer heat in Parliament Square Garden, graphically demonstrating the devastating impact of MND on the body.
The installation is part of a day of action calling on the UK Government to take urgent steps as people with MND continue to miss out on tofersen. The artwork has been modelled on Seckin McGuirk, a retired maths teacher, who along with Conaire is among the 2% of people with SOD1 MND.
Conaire and Seckin are among around 20 people denied tofersen because of NHS constraints – even though around 30 other people are already benefiting from the drug.
Conaire told Belfast Live about his diagnosis: “I was diagnosed in July 2024 but we knew about it the year before. Back in January 2023 was the final straw. I went to a Man United football match with my dad for his 60th birthday and I couldn’t get up the steps to the top of the stadium or stand for too long.
“There had been other issues before that that I hadn’t got seen to. It all started when my foot became very wobbly and then people started to notice that I was walking funny. I ended up seeing a physio rather than a doctor the following March who immediately said it was a neurological issue.
“That was followed by lots of tests and the doctors were not going down the road of MND but something similar but our family history has five cases of motor neurone disease so we knew that’s what it was but it took a year of tests to get the final result.”
Conaire says he wishes to spend as much time with his family, including his daughter Autumn, without burdening them too much
Now Conaire has backed the Association’s Prescribe Life campaign for access to tofersen: “This treatment is important to me because it will allow me to keep my independence longer, by slowing its symptoms down.
“I have a daughter Autumn who is nine and a family I wish to spend as much time with them without burdening them too much. I am currently struggling to walk, button clothing, pull on my socks to name a few.
“It is a struggle physically as my hands and legs fade but mentally to feel my body fading away slowly is most difficult and how it affects the people I love. The current situation must change as there is a treatment that can buy me precious time to enjoy life for longer.
“It is unfair to think there are people receiving this treatment and a few are not due to government inaction and restraints on health departments. Time is not on my side and like this melting ice sculpture, the longer I wait to receive this treatment the quicker I will disappear.
“Tofersen needs to be available for everyone who needs it and needs to be available now. This is what we raise money for, this is why loved ones walk 24 hours or climb mountains, cycle to distant cities. Tofersen is here, it is available, so allow me to have it, we have to find a way.”
What is MND?
MND is a fatal, rapidly progressing disease that affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
It can leave people locked in a failing body, unable to move, talk and eventually breathe. Over 80% of people with MND experience changes to their speech, which may become slurred or quieter. Some people lose their ability to speak entirely.
Later this afternoon, the MND Association, along with members of the All Party Parliamentary Group on MND will hand in a petition signed by more than 21,000 people to Karin Smyth MP and Minister of State at the Department of Health and Social Care.
The petition is calling for the Government to take urgent action so Seckin and other people who need tofersen right now can access it. You can add your name to the petition here.
A Department of Health spokesperson said: “The Department notes that Tofersen for treating amyotrophic lateral sclerosis caused by SOD1 gene mutations, is not currently commissioned in the UK. The treatment is currently being appraised by NICE via the Highly Specialised Technologies programme, however it is not yet clear when NICE will publish a decision. In practice, this means that treatments that have been recommended by NICE for routine use in the NHS in England are also available in Northern Ireland. Should NICE recommend the use of the treatment, the Department will seek to make the treatment available in Northern Ireland in accordance with extant process.
“Where a request for treatment falls outwith this arrangement, the Department may consider requests from Trusts to fund treatment on an individual patient basis in accordance with the Individual Funding Request policy where infrastructure and capacity is in place.”
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