Motor Neurone Disease (Research)

Ian Byrne Excerpts

Monday 12th July 2021 Westminster Hall

[Ian Byrne (Liverpool, West Derby) (Lab) [V]]

It is an honour to serve under your chairship, Ms Cummins. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for introducing this important petition to the House.

I thank the 110,700 people, including 225 of my constituents, who signed the petition and campaigned for an increase in much-needed funding for urgent research into motor neurone disease. I pay tribute to constituents in West Derby who have been diagnosed with motor neurone disease and to their families and friends.

The petition has one clear ask: new Government investment of £50 million over five years to kickstart the pioneering MND research institute. That call is based on the assessments made by the Motor Neurone Disease Association, MND Scotland and My Name’5 Doddie Foundation. The Government, in their response to the petition, claim that they have spent £54 million on MND research over the past five years, but analysis by the MND Association shows that the figure includes general neurological research, often with no tangible link to MND. I therefore urge the Minister to come back with the package of targeted support that is needed.

Today, I will speak about a friend and constituent, Mark Maddox, his fight against motor neurone disease and how his work exposed me to the heart-breaking impact that it can have. I will do everything I can to assist in this campaign moving forward.

I first met Mark a decade ago, when I helped to coach his youngest son’s football team—he will laugh, watching this, at the word “coach”. Mark was diagnosed with motor neurone disease in 2010. It was my first experience of the disease, with the impact that it had on him, his family and friends. Mark is an absolute legend of the local football scene both in Liverpool and at Altrincham football club, where between 1996 and 2006 he made 349 appearance as a tough-tackling captain and centre-half. The bravery with which he has tackled the disease was hewn from that background.

After being diagnosed with motor neurone disease, Mark ran three marathons, skydived, did bike rides, released an album and, in 2011, fronted a nationwide campaign through every football league in the country, reaching more than 2 million people through match-day programmes. He also appeared on Manchester United TV—despite being a huge Liverpool fan—BBC North West and various radio stations, as well as LFCTV making a mini documentary about Mark. That was all done to raise awareness and funds for the campaign to fight this cruel disease.

Mark was told at diagnosis that he would be lucky to live beyond a year—that was 11 years ago. Mark believes that the love and support he receives from his family—his wife in particular—his friends and often complete strangers have helped him to get through to this day. Over the past decade, however, Mark has become increasingly frustrated with the Government’s lack of understanding of people with motor neurone disease and their families and of its devastating effects. He wants change.

To finish, I urge the Minister to listen to Mark and the many other people who have been diagnosed with motor neurone disease and to say, “No more!” Motor neurone disease stopped Mark achieving great things in football and, with world-leading UK scientists on the cusp of major breakthroughs in MND research, we need a commitment from the Government: for a vital increase in the funding that will accelerate the discovery of treatments; and to pledge the funding needed to kickstart a pioneering motor neurone disease research institute. Together, we can work to end motor neurone disease so that people diagnosed, like Mark and countless others, can fulfil their potential.