MND Matters

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.

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.

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.

For more information visit our website.

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.

This episode will contain themes that some listeners may find upsetting. If you need support with bereavement, please visit our Bereavement Support page.

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 homepage mndassociation.org/research.

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.

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 voice banking equipment and to Credit Suisse which funded our voice banking pilot scheme.

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.

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.

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

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 / funding acknowledgements: Nick Smith Foundation and the James Milner Foundation.

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.

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 raised will be spent. We're also joined by Jonathan Griffiths, a big rugby league fan who is living with MND.

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.

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 greater awareness of MND thanks to the efforts of Rob and Kevin.

Full release 01.04.21.