MND Matters

In this episode of  MND Matters , we explore the world of voice banking and how rapidly evolving technology is changing the way people stay heard. Guided by questions from you - the MND community - Steph and speech and language therapist Jen Benson unpack why our voices are such a core part of who we are, and how voice banking helps preserve that identity.  Jen shares when to get started, what to...

“Sometimes the companionship of a dog is better than human company. They don't judge you. You don't have to sort of speak. They're just there. And sometimes that's all you want, because it's hard.”   Through every chapter of our lives, our pets are right there beside us. We look after them, and they look after us. They’re not just animals we live with - they’re family.   In thi...

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 Direc...

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 tub...

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, incl...

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 Bri...

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 Dom...

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...

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...

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 h...

In this captivating episode of the MND Matters podcast, Academy Award-winning actor Eddie Redmayne takes the reins as he sits down with the incredible Lesley Connor, an MND Association volunteer whose unwavering dedication has spanned two decades. Join us as we explore Lesley's journey, from her various roles within the Association to her current position as an MND Connect Helpline volunteer....

This month's episode was recorded on location at the very first Rob Burrow Leeds Marathon, which took place on Sunday 14 May. Our Press Officer, Ally, was roaming the course, Headingley Stadium, our charity tent and reception room to speak with some of our incredible runners and supporters, both pre and post race. You'll also experience the atmosphere when Kev and Rob crossed the finish li...

What is motor neurone disease? Is there a cure? What causes it? Who does it affect? In this episode, our host Helen, is joined MND Association Head of Research, Dr Nick Cole. They discuss the basics about motor neurone disease and try to answer some of the most frequently asked questions about the disease. The Education and Information team at the Association produce high quality information for p...

Did you know that it's estimated that 80% of people living with MND will need a wheelchair during their time living with the condition? In this insightful episode, our guest host, Pauline, who is Head of National Care at the MND Association, is joined by Simon Aspray, who is living with MND, and Maggy Hevicon, one of two specialist wheelchair therapists at the MND Association. Maggy, along wit...

This month we're joined by special guest host, Good Morning Britain’s Charlotte Hawkins. Charlotte speaks with Kuai Peng and David who discuss their experiences of being an unpaid carer for somebody with MND. Both highlight the need for more support for families who often take on the bulk of caring responsibilities and are shocked to hear MND Association stats about how few carers are aware of the...

This month, MND Matters is a little different. Instead of one episode, we're sharing four short stories. Each features someone who has fundraised for the MND Association and those affected by motor neurone disease. This is all part of our January campaign, #TakeOverMND . In the last of our weekly episodes, our host Helen chats to Julie, who is living with motor neurone disease (MND). Despite the c...

This month, MND Matters is a little different. Instead of one episode, we're sharing four short stories. Each features someone who has fundraised for the MND Association and those affected by motor neurone disease. This is all part of our January campaign, #TakeOverMND . This week we meet Richard. Richard’s dad died of MND in 2013. Since then he has galvanised ‘the MND Army’ - a community of frien...

This month, MND Matters is a little different. Instead of one episode, we're sharing four short stories. Each features someone who has fundraised for the MND Association and those affected by motor neurone disease. This is all part of our January campaign, #TakeOverMND . This week we meet Abi. Last year Abi completed the Thames Bridges Ultra Challenge, along with a team of her colleagues and famil...

This month, MND Matters is a little different. Instead of one episode, we're sharing four short stories. Each features someone who has fundraised for the MND Association and those affected by motor neurone disease. This is all part of our January campaign, #TakeOverMND . First up is Luke. Our host, Helen, chats with Luke about his fundraising in honour of his mum, who is living with MND. Luke has...

“This has been the job of my life.” Sally Light, Chief Executive, sat down with host Steph to reflect on ten eventful years leading the MND Association ahead of stepping down from the role at the end of 2022. Your questions have shaped this episode and in answering them, Sally shares some of her proudest moments, her hopes for the future of MND research and her parting words for the MND community.

Seven days. 280 miles. More than £2 million raised. In this special episode of MND Matters, we went behind the scenes and followed our patron Kevin Sinfield OBE as he ran from Murrayfield, Edinburgh, to Old Trafford, Manchester, to complete his Ultra 7 in 7 challenge. You’ll hear from members of the MND community about why they felt compelled to come out in their hundreds to support Kevin and his...

NHS Continuing Healthcare (CHC) is a complex subject, one that is often misunderstood, but can be hugely important for those living with motor neurone disease (MND). In this episode, we speak to Dan Harbour from Beacon CHC to understand CHC, how to access it, and what support is available throughout the process. Dave Setters, who is living with MND, and Marian Ward, who lost her husband to MND, jo...

In this uplifting episode, Steph is joined by Ken Blackburn, who is living with MND, and Antonia Lee-Bapty. Ken films what he gets up to in his all-terrain wheelchair for his Life after wheels vlog. Antonia is Managing Director at Euan’s Guide, the disabled access charity. Ken and Antonia share how MND can make getting out and about more difficult, plus their top tips for accessible days out. Ken...