MND Matters

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...

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, t...

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 preconceive...

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 ope...

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 t...

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. We also get...

Beck and Chris are joined by Jane Smith, a Specialist Occupational Therapist, Tom, who is living with MND, and his wife Alice to talk about home adaptations. Jane discusses the work she’s been doing on the MND Association's 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 . Tom and Ali...

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 nationwi...

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. Hosted by Head of Research Development Nick Cole, the podcast delves in...

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...

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 o...

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...

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...

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 a...

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...

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...

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. With thanks to / f...

We're joined by Leeds Rhino's Director of Rugby, legend, and friend of Rob Burrow, Kevin Sinfield. In December 2020, Kevin and his team ran an incredible 7 marathons in 7 days, dubbed the 7 in 7 Challenge, in honour of Rob and to raise money for the MND Association. They raised a staggering £2.7 million. Kev shares how it went, how important it is to support people like Rob and how the money he ra...

Welcome to the launch of the Motor Neurone Disease (MND) Association's brand new podcast - MND Matters. In our first episode, former Leeds Rhinos star, Kevin Sinfield, talks to us about raising £2.2 million for the MND Association in honour of his best mate, Rob Burrow. We're also joined by rugby league fan, Jonathan, who is living with motor neurone disease and shares what it has been like to see...