MND Matters

Sports journalist and West Yorkshire branch patron Tanya Arnold sits down with Chief Executive Tanya Curry, who recently marked one year in post at the MND Association. I In this episode, Tanya discusses her tenure so far, her passion for supporting people affected by MND and her ambitions for the Association in 2024 and beyond.

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.

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 communications@mndassociation.org

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.

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!

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 mndconnect@mndassociation.org. 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.

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.

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 mndconnect@mndassociation.org.

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!

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!

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.

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 - click here!

“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.

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 OBE 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 himself.

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 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, who lost her husband to MND, join us for a frank discussion about their personal experience navigating the system, and share some top tips for those going through the NHS CHC assessment process. For more information and support, click here to access our CHC info sheet or visit the NHS website.

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. 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: www.euansguide.com.

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 free Will-writing services, and our legacy events can be found on our website. You can also contact our Legacies Team by phone 01604 611 799 or email us at legacies@mndassociation.org.

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. Find out more about the MND Association's support for children and young people here.

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. If you would like to get in touch with the MND Association LGBTQIA network group, please email LGBTQIA@mndassociation.org. If you have been affected by any of the issues discussed in this episode, please contact MND Connect for support.

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.