Altnagelvin First in North to provide genetic treatment for Motor Neurone Disease

The Western Health and Social Care Trust (Western Trust) said it was "delighted" to announce it was the first HSC Trust in the North "to provide a genetic treatment for Motor Neurone Disease (MND) through a ground breaking new drug named Tofersen".

A spokesperson for the Tust said: "Tofersen has been shown to slow and in some cases halt the progress of MND for those with the SOD1 gene variation of the disease".

The drug was administered to the first patient in August by the Altnagelvin Hospital Neurology Team.

Dr Gavin McCluskey, Western Trust Consultant Neurologist and Specialist in Motor Neurone Disease said: “This is the first genetic treatment to become available to MND patients in the past 30 years and treats those who have the SOD1 variation of the disease.

“It is a new class of treatment that works to act on reducing the effect of the abnormal gene which then, hopefully reduces the damage that is done to the nerves and slow down the rate of progression.

“Myself and the wider Neurology and Research Teams at the Western Trust are delighted that we are able to offer this ground-breaking treatment and have had fantastic support from Specialist Pharmacy and Senior Management to allow us to be in the position that we are in today, treating our first patient. It is a very exciting time ahead. I hope that this treatment really benefits Conaire and other patients in the future.”

The drug Tofersen is administered monthly via lumbar puncture and Mr Conaire Quinn was the first Northern Ireland patient to receive it at Altnagelvin Hospital. 

Conaire, a father of one, hailing from Co.Down has been campaigning for the drug to become available for many months and hopes that it will prolong his independence.

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Conaire explained: “This new treatment will help me have time with my family and young daughter and allow me to continue to do the things I want to do with them, like going on holidays or the simple things like going to the park.

The wider multidisciplinary team - Motor Neuron.

“This really has been a breakthrough treatment and I know that if I am trailblazing it and getting the treatment, I know that I am also helping others who are in a similar position to me.”

“I am so thankful to the Neurology team at Western Trust who have been so supportive and forward thinking. We are going to be seeing a lot of each other in my treatment plan ahead and look forward to continuing on this journey together.”