Episode 30: The Love Inside

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 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. 

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Episode 29: Cultural challenges with MND

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.  

Find out more about the Association’s inclusion work.

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]  

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Episode 28: When Eddie met Lesley

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, take a look and find a role that suits you.

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Episode 27: Rob Burrow Leeds Marathon

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 line together. Listen in to get a sense of the occasion.

We have guaranteed charity places for next year's Rob Burrow Leeds Marathon, sign up today!

If you're living with or affected by MND and need advice or support, contact our MND Connect Helpline on 0808 802 6262 or [email protected].

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Episode 26: 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.

If you're living with or affected by MND and need advice or support, contact our MND Connect Helpline on 0808 802 6262 or [email protected].

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.

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Episode 25: Wheelchairs

In this insightful episode, Pauline is joined by Simon Aspray, living with MND, and Maggy Hevicon.

80% of people living with MND will need a wheelchair during their time living with the condition.

Maggy is one of two specialist wheelchair therapists at the MND Association and along with the care improvement coordinator they work with NHS wheelchair services to make sure people living with MND get what they need, when they need it.

The Association also provides financial grants for people living with MND towards a variety of wheelchair accessories which are not funded by statutory services. Last year the Association funded almost £70,000 of these grants for people living with MND, including one for Simon, who shares the impact of this support.

Find out more about support on our Wheelchair Support service page.

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Episode 24: Support MND Carers feat. Charlotte Hawkins

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 [email protected].

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Episode 23 (1): Luke's Fundraising story - #TakeOverMND

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

Episode 23 (2): Abi's Fundraising story - #TakeOverMND

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 family, to show their support for her dad, who is living with MND*. Abi talks to our host Helen about the trek and why it was such a positive experience. 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! *Sadly, Abi's dad died in March 2023.

Episode 23 (3): Richard's Fundraising story - #TakeOverMND

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.

Episode 23 (4): Julie's Fundraising story - #TakeOverMND

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 challenges she faces, Julie has taken part in a number of fundraising events, including our Mission 5000 challenge.

She tells us why fundraising is so important to her, how the support she’s received from the Association has made a difference and why she wanted to give back. 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

Episode 22: Sally Light - Reflecting on 10 years as CEO

“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.

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Episode 21 - Kev's Ultra 7 in 7

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 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 Sinfield.

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Episode 20 - NHS Continuing Healthcare

NHS Continuing Healthcare (CHC) is a complex subject, and one that is often misunderstood.

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, whose husband had MND, join us for a frank discussion about their personal experience navigating the system, and share some tips for those going through the assessment process.

For more information and support, please visit:

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Episode 19 - Travelling with MND

In this uplifting episode Steph is joined by Ken Blackburn, 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.

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Episode 18 - Your signature is more powerful than you think

In this thought-provoking episode, Helen is joined by MND researchers; Professor Majid Hafezparast, Dr Greig Joilin, Libby Moody and MND Association Branch volunteer, Hetty Smith. They all share the importance of gifts in Wills and the difference they have made to their work in research and care.

Debbie Hyslop, Legacy Marketing Officer at the MND Association, also joins us to explain what gifts in Wills are, dispel the myths around these gifts and shares how you can write your Will for free with the MND Association.

More information about gifts in Wills, our gifts in Wills glossary, our free Will-writing services, and our legacy events can be found on our website. You can also contact our Legacies Team by phone 01604 611799 or email us at [email protected]

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Episode 17 - Misha Grimes

Beck is joined by Misha who lost her Dad John Grimes to MND in August 2021. Misha became a carer for her dad during his illness.

In this emotional but uplifting episode, Misha talks to us about the journey her and her family have been through since John’s diagnosis until now, nearly a year since he died. Exploring topics such as denial, acceptance, the pandemic, being a carer and celebrating the man that her dad was.

Episode 16 - LGBTQ+ Pride Month

Celebrate pride month with the MND Association. MND does not discriminate, it can affect anybody – including the LGBTQ+ community.

In this episode we bring together Sam, who is living with MND, and Angela who is a volunteer at Opening Doors. They discuss some of the challenges such as preconceived assumptions or barriers to healthcare and why inclusive health and social care is vital for all people living with MND.

They are joined by MND Association Chief Executive, Sally Light, who explains what we are doing to improve inclusivity so that everyone feels comfortable accessing our services.

If you would like to get in touch with the MND Association LGBTQIA network group, please email [email protected]

If you have been affected by any of the issues discussed in this episode, please contact MND Connect for support.

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Episode 15 - Friendship

Helen is joined by Jennie, who was diagnosed with MND in September 2021, and her friends Natalie, Amanda and Justine. Together these ladies have been friends for over 3 decades.

In this heartfelt episode the ladies discuss the impact of a friend's MND diagnosis. Jennie shares how she broke the news of her diagnosis with her friends and how their friendships have strengthened from it. She talks openly about the different reactions she received and how her friends have been a much needed space to allow her to just be herself.

Natalie, Justine and Amanda also share with us ways in which they are supporting Jennie through her MND journey by creating memories and helping to raise awareness and funds.

Episode 14 - How campaigning works

In this episode we are joined by chair of the All-Party Parliamentary Group on MND, Andrew Lewer MBE MP, who discusses how he raises the profile of MND in Parliament.

We are also joined by Campaigns Volunteer Sue Heal and founding member of the Patients United 2 End MND group Nicola Waters who highlight the different ways they have gotten involved in MND campaigning.

From signing petitions to knocking on the door of 10 Downing Street there are lots of different ways to get involved.

If you would like to keep up to date with our campaigns, you can join the Campaign Network for free.

If you have been inspired by this episode and then find out more and sign up to become a dedicated Campaigns Volunteer.

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Episode 13 – MND Think Tank and I Will Always Be Me storybook

Becky is joined by Nick Goldup, Director of Care Improvement at the MND Association, and Stuart Moss, Head of IT Innovation at Rolls Royce, who together form part of the MND Next Generation Think Tank. In this episode, Nick and Stuart discuss how the Think Tank came about, who is involved, and how tech giants are collaborating to create solutions for issues facing people living with MND.

We also get to hear from Mike, living with MND, his partner Mary, and Diana, who is also living with MND. Together they tell us about their experiences of using I Will Always Be Me to bank their voice.

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Episode 12 – Home Adaptations

Becky and Chris are joined by Jane Smith, a Specialist Occupational Therapist, and Tom, who is living with MND, and his wife Alice to talk about home adaptations. Jane discusses work she's been doing on the Act to Adapt campaign, which aims to ensure councils are meeting the housing needs of people with MND. To get involved in the campaign, visit the Act to Adapt Hub.

We also talk about grant support provided by the Association. Find out more on our website.

With thanks to the MyName'5 Doddie Foundation, the Darby Rimmer Foundation and Challenging MND for generously supporting the MND Association’s grants programme.

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Episode 11 - Fundraising

Fundraising is key to the work of the MND Association. In this episode, we chat with Jez, Tamara and Matt – all three are inspirational fundraisers for the Association. They’ve raised and are still raising money to help people living with motor neurone disease and their families.

In this episode, Chris chats to all three as they discuss their challenges ranging from the London Marathon, a nationwide cycle and 50 different challenges in 12 months. They chat about the best bits, the tough moments and why it’s so important to fundraise.

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Episode 10 - International Symposium on MND / ALS

The International Symposium on MND / ALS brings together some of the finest minds in MND research from across the globe to share ideas, collaborate and network, all with one aim – to understand the causes and to find effective treatments and a cure for the disease. The 2021 event was the 32nd, and the second virtual Symposium, organised by the MND Association. Discover the history of the Symposium, what it takes to beam it to 1500 delegates in 44 countries, and what we learnt at this year’s event.

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Episode 9 - Dating after MND diagnosis

Meet Mike: he is 36, lives in Grimsby, loves cars and on his quest to find love applied for Channel 4’s TV show, First Dates. Mike made it on to the programme, then, a few months after filming in 2020, he was diagnosed with MND.

In this episode hosts Chris and Suzanne chat to Mike about being matched with Zoe on First Dates and his approach to dating before and after being diagnosed with MND.

If you are affected by MND or Kennedy's disease and would like more information about sex and relationships, read our Sex and relationships booklet.

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Episode 8 - Working and MND

Steph and Becky speak to Chris Johnson, former assistant chief constable for West Midlands Police. Chris was diagnosed with MND only six months following his promotion and as part of National Work Life Week, he openly talks to us about why he wanted to carry on in a career that meant so much to him.

Since leaving the force, Chris has raised both funds and awareness for the Association, including our United to End MND campaign, asking the Government for £50m over five years for MND research.

If you have been affected by any of the topics raised in this podcast can find out more about services the Association offers including employment advice, help with benefits, and support grants on our website. Alternatively, you can contact our helpline, MND Connect.

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Episode 7 - Managing emotions

Receiving an MND diagnosis can feel devastating and is likely to bring mixed emotions. We know how people respond is very individual so this episode explains that there is support available to help manage emotions in a way that is tailored to each person.

In this episode, Becky and Nick talk to Cath and Ian Muir who bravely share the emotions they’ve each faced since Cath’s diagnosis in 2014.

We're also joined by Dr Sian Hocking and Dr Emily Mayberry who deliver specialist psychological support to people living with and affected by MND, including Acceptance and Commitment Therapy which is currently being funded as a research trial by the Association.

This episode contains mental health themes that some listeners may find upsetting.

For more information visit our webpage

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Episode 6 - Finding your way when someone you love dies from MND

Talking about bereavement can be difficult, but not talking about it can be just as tough. In this episode of MND Matters, we hope to open up this important conversation.

Steph and Becky talk to Matthew and Nathalie. While both of them have experienced the pain of losing loved ones to MND. they have now found a sense of hope and positivity for the future.

They talk honestly and openly about losing loved ones to MND, what they have learnt and how they are now determined to use their experiences as a force for good.

This episode contains themes that some listeners may find upsetting.

If you need support with bereavement, please visit our Bereavement Support page

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Episode 5 - MND Research

Becky and Nick are joined by Dr Brian Dickie, Director of Research Development at the MND Association. In this episode Brian takes a look at some of the questions frequently asked by the MND community and explores some of the research behind these key topics. Professor Martin Turner, Consultant Neurologist and Co-Director of the Oxford MND Care and Research Centre, gives an insight into genetics and MND and Dani, who is living with the disease, shares her experiences of taking part in a clinical trial.

As mentioned in the podcast, the MND Association is currently funding over 80 research grants. This is only possible thanks to the support of the many individuals, businesses, trusts and partner organisations who give so generously to our MND research programme.  Thank you for your support.

For more information about MND research, including opportunities to take part, visit our research section.

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Episode 4 - Voice banking

Steph and Nick talk to Sue Lodge, who is living with MND, to find out why she banked her voice following her diagnosis. She shares what it means to her family and reveals some of the special phrases she uses her banked voice to say. They’re also joined by Richard Cave, the MND Association’s Speech and Language Therapist to discuss the how, when and why of voice banking. A special thank you goes out to Credit Suisse UK who funded the voice banking programme through our charity of the year partnership with them in 2017.

You can find more information about voice banking on our website.

With thanks to the Ian Karten Charitable Trust for the support which enabled us to increase access to voicebanking equipment and to Credit Suisse which funded our voice banking pilot scheme.

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Episode 3 - Volunteers' Week

In this episode volunteers Liz Groundland, Mark Gately and Julia Peckham join Steph and Nick to mark Volunteers' Week 2021. The Association is proud to have more than 12,500 volunteers supporting people living with and affected by MND. Liz, Mark and Julia discuss their volunteering roles and why they wanted to get involved.

If you would be interested in volunteering for the MND Association you can find details on our website.

With thanks to The Netherby Trust for generously supporting the training of new volunteer Association Visitors.

Sadly, Julia died in April 2024 after a short illness. We are so grateful for all of the support Julia was able to provide to people affected by MND while volunteering for the MND Association.

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Episode 2 - Family Support

Steph and Nick speak to 22-year-old Megan Donoher, whose Dad was diagnosed with MND in April 2020. Megan gives a moving account of the impact his diagnosis has had on her family and the tailored support she’s received from the Association's children and young person's service. They're joined by Laura Willix, Children and Young Person's Development Manager at the MND Association.

Since we recorded this episode with Megan, her dad, John, has sadly died. We are grateful to Megan and her family for giving us permission to continue sharing this episode.

With thanks to: Nick Smith Foundation and James Milner Foundation

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Episode 1 - Kevin Sinfield

Steph and Nick talk to Kevin Sinfield about how his friendship with Rob Burrow led him to take on the mammoth task of completing 7 marathons in 7 days, in turn inspiring hundreds of supporters to take on their own 7 in 7 challenge. They're also joined by Jonathan Griffiths who is living with MND. Jonathan is a big rugby league fan and shares what it has been like to see greater awareness of MND thanks to the efforts of Rob and Kevin.

Read our latest news story and find out how the £5.7 million invested into MND research will be spent - thanks to Kevin and you.

This episode was recorded remotely while COVID-19 restrictions were in place. Please bear with the occasional technical glitch.

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Views and opinions expressed by guests on MND Matters do not necessarily represent those of the MND Association. We make every effort to ensure the information we share is accurate. We welcome comments, suggestions or corrections. Please email [email protected]

Please consult your health and social care professional for medical advice in relation to your particular circumstances. This podcast is owned by the MND Association. Registered Charity no. 294354.