MND Matters

"One of the things we’ve said is - as long as we laugh more times than we cry, we're winning.”

Carers of people with motor neurone disease (MND) often face significant emotional and financial challenges.

In this episode, released during Carers Week 2024, Martyn shares his personal experience as an unpaid carer for his wife Anna, who was diagnosed with MND in May 2023.

As part of our MND Guarantee campaign, we are calling on the next government to do a full review of the support currently available to unpaid carers. Unpaid carers are the backbone of support for people with MND, and the financial support they receive does not reflect the contribution they make. We want this to change.

You can urge your MP candidates to sign the MND Guarantee by taking part in our e-action – it will only take a few minutes.

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 [email protected]  

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 [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.

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.