MND Matters Episode 36: Driving change for the MND community

Meet Rick and Ali – our hosts for this special episode of MND Matters. Rick is a biologist, educator, advocate and artist living with PLS - a slow progressing form of MND. Ali is a licensing officer for local government. Her mum, Sheila, died in March 2025 soon after being diagnosed with MND.  Together, Rick and Ali put MND research under the microscope with Mike Rogers, the Association’s Director of Research and Innovation. The trio discuss the development of the Association’s new five-year research strategy, how it resulted in four key aims: understand, detect, discover and innovate, and how the MND community shaped the strategy from the very beginning.   

In this powerful episode, host Domonique is joined by Lorraine Redmond, who lives with MND, Emma Wood, a clinical lead dietitian, and Jonathan Phang, a cook and MND Association ambassador. Together, they explore the emotional and practical challenges of eating and drinking with motor neurone disease. The conversation is rich with practical tips - from modifying food textures and using feeding tubes flexibly, to managing social anxiety around eating in public. It’s also a reminder that food is more than fuel - it’s love, culture and togetherness. For more information about eating, drinking and swallowing with MND, see our guide, Eating and drinking with motor neurone disease (MND). You can request a free printed copy from our helpline MND Connect. 

In this episode of MND Matters, Chief Executive Tanya Curry and Director of Engagement Richard Evans reflect on a transformative year for the MND Association. From record-breaking fundraising and expanded grants to bold advocacy and the launch of a research nurse network, Tanya and Richard share how the Association is stepping up with urgency and ambition to focus on delivering more impact, including faster access to emerging treatments, targeted support, and a louder voice for the MND community. 

In this episode of MND Matters, Helen is joined by Tris Dyson from Challenge Works, and the MND Association’s Dr Mike Rogers and Dr Brian Dickie, to explore the groundbreaking £7.5 million Longitude Prize on ALS. This global challenge aims to revolutionise drug discovery for ALS, the most common form of motor neurone disease, by harnessing the power of artificial intelligence. Tris, Mike and Brian discuss how AI-based approaches can transform drug discovery for the treatment of ALS, and accelerate progress towards effective therapies.  Find out more about the prize, or how to enter, by visiting https://als.longitudeprize.org/. 

Eighteen months after announcing his diagnosis of MND, actor and writer Michael Patrick gives us an insight into his starring role in a special adaptation of Shakespeare’s Richard III – in which Richard receives a diagnosis of MND. Alongside friend and creative partner Oisín Kearney, Michael talks about how moments of the play hold up a mirror to his own MND experiences, and the pair give host Domonique a trip down memory lane to relive their past successes, including the award-winning play and BBC3 series, My Left Nut.  

Coronation Street actors Dan and Peter answer your questions in this special episode of MND Matters. Go behind the scenes of Peter’s award-winning portrayal of Corrie character Paul, who was diagnosed with MND in 2023, and hear more about how Dan’s personal connection to the disease influenced playing the role of Paul’s husband and carer, Billy. 

"One of the things we’ve said is - as long as we laugh more times than we cry, we're winning.” Carers of people with motor neurone disease (MND) often face significant emotional and financial challenges. In this episode, released during Carers Week 2024, Martyn shares his personal experience as an unpaid carer for his wife Anna, who was diagnosed with MND in May 2023. As part of our MND Guarantee campaign, we are calling on the next government to do a full review of the support currently available to unpaid carers. Unpaid carers are the backbone of support for people with MND, and the financial support they receive does not reflect the contribution they make. We want this to change. You can urge your MP candidates to sign the MND Guarantee by taking part in our e-action – it will only take a few minutes.

Sports journalist and West Yorkshire branch patron Tanya Arnold sits down with Chief Executive Tanya Curry, who recently marked one year in post at the MND Association. I In this episode, Tanya discusses her tenure so far, her passion for supporting people affected by MND and her ambitions for the Association in 2024 and beyond.  

Have you seen our new awareness campaign, The Love Inside? In this episode, host Helen chats to the MND Association’s Director of External Affairs Chris James to find out more about the awareness campaign, the reasons behind exploring TV advertising for the first time in years and what the Association hopes to achieve from The Love Inside.   Also on the podcast is Mike and Zoe Sumner, who many of you might remember from Episode 9 of MND Matters: Dating after diagnosis. Mike and his wife Zoe star in some of The Love Inside adverts and they tell us what it was like to be involved and their hopes for the campaign.   You can watch our TV ad here.

In this thought-provoking episode of the MND Matters podcast, Yvonne Johnson, living with MND, and author Liv Little, whose dad died with MND in 2022, talk to the Association about some of the cultural challenges around navigating the disease.     Join us as we learn of some of the challenges around representation and medical support for people of colour in the MND community. While Yvonne shares her incredible story and the ways she’s trying to bring about change, Liv tells us about her dad and his journey with the disease, who she was caring for while writing her debut novel, Rosewater.     To find out more about the Association’s inclusion work, click here.   We’d love to hear more stories from underrepresented people in the MND community. If this sounds like something you’d like to be involved with, contact [email protected]