Altnagelvin first in North to provide genetic treatment for rare form of Motor Neurone Disease
The Western Health has become the health authority in the North to administer genetic treatment for Motor Neurone Disease (MND) through a ground breaking new drug named Tofersen.
Tofersen has been shown to slow and in some cases halt the progress of MND where it is caused by a SOD1 gene variation – a rare inherited form of the illness.
The drug was administered to the first patient in August by the Altnagelvin Neurology Team.
Dr. Gavin McCluskey, Western Trust Consultant Neurologist and Specialist in MND 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 patient to receive it at Altnagelvin.
Conaire, a father of one, hailing from Co. Down has been campaigning for the drug to become available for many months and hopes it will prolong his independence.
Conaire explains: “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.
“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.”
Mr Quinn added: “I am so thankful to the Neurology team at Western Trust who have been so supportive and forward thinking.”