MND Matters Podcast

MND Matters

Motor Neurone Disease Association
The MND Matters podcast offers people living with and affected by motor neurone disease access to information, informal advice and expertise. Created by the MND Association, the podcast will explore a wide range of subjects alongside people affected by MND. As well as being an extra information source for the MND community, MND Matters will also be  a new tool for the Association to use to raise awareness among the wider community. Find out more on our website www.mndassociation.org.
MND Matters Episode 30: The Love Inside - The Making of our Campaign
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.   You can watch our TV ad here.
Feb 1, 2024
20 min
MND Matters 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.     To find out more about the Association’s inclusion work, click here.   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]  
Aug 3, 2023
39 min
MND Matters Episode 28: Eddie Redmayne meets Lesley Connor
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, click here to find a role that suits you.
Jun 21, 2023
16 min
MND Matters 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, click here to sign up!
May 25, 2023
30 min
MND Matters Episode 26: What is motor neurone disease (MND)?
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. Downloads of our publications are available from our website at www.mndassociation.org/publications. 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.
Apr 27, 2023
17 min
MND Matters Episode 25: Wheelchairs
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. For more information about wheelchair support visit our Wheelchair Support Service.
Mar 30, 2023
31 min
MND Matters Episode 24: Support MND Carers ft. 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].
Mar 2, 2023
37 min
MND Matters 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 - click here!
Jan 26, 2023
18 min
MND Matters 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. Find a fundraising event for you this month - click here!
Jan 19, 2023
18 min
MND Matters 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.
Jan 12, 2023
14 min
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