MND Matters

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.  

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.  

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.

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.

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.

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 with the care improvement coordinator, works 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.

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.

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 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, 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, 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.

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 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.

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.

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.

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, a charity providing information and support services specifically for LGBTQ+ people over 50 in the UK. 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.

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 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.

Beck 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 solution for issues facing people living with MND.

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.

This episode of MND Matters was recorded live at our 32nd International Symposium on ALS/MND earlier in December. Featured are interviews with some of the key players, including the MND Association’s Director of Research Development, researchers, a delegate with MND and the team in charge of beaming the event around the globe.

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.

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.

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. 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.

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 their experiences, what they have learnt and how they are now determined to use them as a force for good.

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.

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.

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.