MND Matters by the MND Association

When someone is diagnosed with MND, the effects can ripple across the whole family. Lindsay shares her experience of living with PLS – a form of MND – and how her daughter, Cally, struggled with anxiety and uncertainty following the diagnosis.  

Joined by Emily from the MND Association's Children, Young People and Families Service, the episode highlights the emotional challenges young people can face, from worries about a loved one’s health to balancing school, friendships and future plans. We also discuss the tailored support available from the Association, including counselling, school support, one-to-one guidance, grants, resources and ongoing help for children and young people up to age 25. 

For more information about our support for families: https://www.mndassociation.org/support-and-information/children-and-young-people/support-families-children-and-young-people 

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 [email protected]  

“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 this episode of MND Matters, Domonique sits down with Lizzie from Woodgreen Pets Charity and Channel 4’s The Dog House. Lizzie’s husband Chris was diagnosed with MND at just 34. In this episode she discusses the challenges of being a carer while raising young children, but how bringing puppy Betty into the home gave the family comfort, routine and companionship.  

Drawing on her personal and professional experience, Lizzie also shares practical advice for caring for pets while managing the changes MND might bring. 

You may hear the very occasional bark during the episode – Lizzie’s dog Bumblebee couldn’t resist getting involved in the episode too.  

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/. 

"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.