Bill McNally was a dear friend and a man I worked alongside for over 35 years. He died from Motor Neurone Disease on 21st October 2025, leaving behind his amazing wife, Mel and their 15 year old son, Zac.

Personally I owe Bill a lot for his commitment, support and encouragement in the development of our printing business from the 1980s and onwards. It was also down to Bill that I became a runner, when he gifted me an entry to the New York Marathon in 2017. I think we were both quite drunk at the time, and we had a good laugh about it. But looking back, Bill knew exactly what he was doing. He had an amazing knack of making good things happen, and knew I would commit to the task in hand. I completed the New York Marathon on Guy Fawkes in a rime of 4 hours and 8 minutes.

The Rob Burrows Leeds Marathon will be my second marathon (I'm aiming to knock half an hour of the New York time), and I am running to raise funds for the MNDA and their research into finding a way of arresting this cruel disease.

I would also like to share, in Mel's words, her experience of dealing with the shock and consequences of Bill's diagnosis :

"Bill was officially diagnosed in January 2023 with MND after symptoms starting Summer 2021.

From genetic testing results we learnt Bill had a mutation in the FUS gene. I undertook. some research into this, and the IONIS360 trial came up with the UK lead being a Professor Chris Shaw. I contacted him via LinkedIn and within hours he'd replied to me and by May we travelled to Kings College hospital London for Bill's initial screening assessment. He started on the drug trial June 2023. It was 33% placebo and 66% receiving the drug - this was classed as part 1 of the trial. Part 2 started November 2024, and we know that he definitely started to receive the INO363 drug at this point.

An investigational antisense medicine that is designed to reduce the production of the Fused in Sarcoma (FUS) protein which can lead to rapid, progressive loss of motor neurons. People with a change in the FUS gene can develop a rare form of ALS, referred to as FUS-ALS.

Bill participated in the trial and attended KCL every 12 weeks from June 2023 until June 2025 until unfortunately his health deteriorated to the point where he could no longer travel the 570 mile round trip.

He passed away at home 21st October 2025.

His stoic strength shone through as always and as ever only thinking of others. In his words if taking part in this trial didn't work for him then he hoped that the data that had been gathered from his participation and him donating his brain to the brain bank, that this could help towards finding a cure for this cruel disease that strips people of their independence, dignity and ultimately life.

Points:

To raise awareness to help with faster diagnosis

To push the government to give the financial resource to faster NHS genetic testing