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 do if your voice has already changed and how AI is creating increasingly natural digital voices. We also highlight support available, funding options and the wide range of devices and access methods now available - even for those with limited movement. Find out more about our financial support: Contact our MND Connect helpline on 0808 802 6262 or email mndconnect@mndassociation.org

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 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.

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.

"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.

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. Throughout this heartfelt conversation, Eddie and Lesley delve into the challenges, triumphs, and the immeasurable impact Lesley has made in the lives of individuals and families affected by motor neurone disease – shining a light on the vital role volunteers play across the country. Tune in and be inspired by Lesley's passion, resilience, and selflessness as she shares her experiences and the work carried out by the MND Association. Get ready for an episode that will broaden your understanding and remind us all of the power of community. Eddie and Lesley, the stage is yours. If you would like to volunteer for the MND Association, click here to find a role that suits you.

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 people living with and affected by MND, including carers, children and young people. The resources cover a wide range of topics, including daily living, symptom management and quality of life. Our care information is accredited by PIF Tick, the only UK quality mark for trustworthy health information. We also have a wide range of resources and educational opportunities to support health and social care professionals working with people with MND. Downloads of our publications are available from our website at www.mndassociation.org/publications. If you're living with or affected by MND and need advice or support, contact our MND Connect Helpline on 0808 802 6262 or mndconnect@mndassociation.org. Following the recording of this episode, the Food and Drug Administration (FDA) in the USA have announced that they have approved an MND treatment called Tofersen (Qalsody) for the treatment of SOD1 MND in the United States. SOD1 MND is where there is a mutation within the SOD1 gene and accounts for around 2% of all MND cases. This news is a significant step forward in the fight against MND and further highlights the commitment and dedication of the MND community in finding effective treatments. Tofersen is currently not approved in the UK. However, it is being reviewed by the European Medicines Agency to see if the treatment could be approved in the UK and Europe.

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 their right to carer’s assessment. If you’d like to get involved in the Support MND Carers campaign, check out our webpage! If you care for somebody with MND, we have a support page here. The MND Connect helpline is available at 0808 802 6262 or mndconnect@mndassociation.org.

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 friends, family and colleagues who’ve been tireless in raising funds and awareness in the fight against MND. He shares his ideas, experiences and motivations. This month we need your help to #TakeOverMND for all those living with MND in the UK. Find a fundraising event for you this month - click here!

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 set himself the incredible challenge of running 5K for a year, running the distance for 365 days straight. This month we need your help to #TakeOverMND for all those living with MND in the UK. Find a fundraising event for you this month - click here!

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 team, and what it means to have someone like Kevin raising awareness and supporting the fight against MND. You’ll also hear an exclusive clip from Kevin himself.

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 uses a communication aid and pre-programmed his answers ahead of the podcast recording. More information about travelling with MND can be found in our free guide Getting around. Our MND Connect team can support with queries about accessible travel plus our support grants that can help financially towards equipment or trips away, and our online forum is a place to share travel tips and reviews. Check out Ken’s Life after wheels vlog on YouTube and the Euan’s Guide website: www.euansguide.com.

Becky is joined by social media influencer, Misha Grimes, who lost her dad, John, to motor neurone disease in August 2021. Misha became a carer for her dad during his illness. In this emotional but uplifting episode, Misha shares with you the journey her and her family have been through since John’s diagnosis until now, nearly a year since his death. We explore topics such as denial, acceptance, the pandemic, being a carer and celebrating the John's life. Find out more about the MND Association's support for children and young people here.