Sometimes emotional, sometimes humorous, always honest – MND Matters gives people affected by MND the chance to share their stories.
The podcast, brought to you by the MND Association, tackles a host of subjects with the aim of sharing experiences, offering informal advice and support, and raising awareness.
Listen to episodes of MND Matters using the links below, or search MND Matters in your chosen podcast provider.
Meet your hosts
Hello I'm Chris and I am Director of External Affairs for the MND Association. I'm really excited to be part of the MND Matters podcast. In my spare time I'm a keen runner and have completed a few marathons and half-marathons for the Association. I also do a bit of acting and for the 2.6 challenge last year I attempted to recreate 26 iconic film scenes in 26 days – the quality was variable.
Hi, I'm Helen, I am a regional fundraiser for the MND Association and I have the privilege of helping all the amazing people fighting and fundraising against MND in the South West while also working alongside the incredible MND local branches and groups across the region.
I joined the Association in January 2021 and couldn't be prouder to be helping make a difference in my own little way. My grandad sadly died of MND so I'm incredibly passionate to raise as much awareness as possible which is why I'm so excited to join the podcast team.
I live just outside Bristol and when I'm not working or helping raise money for MND you might find me volunteering with my local search and rescue team.
Hi, I'm Dr Nick Cole and I'm the Head of Research at the Association. My passion for MND research started in 2010 when I was living in Australia where I applied some of my research involving zebrafish to MND. From that moment, I was hooked on trying to understand more about this complex disease and help the people affected. I was so excited to see the Head of Research job open up at the Association and I haven't looked back.
Presenting MND Matters is a huge honour, I feel privileged to hear first hand the stories and experiences of people affected by MND. Fun fact: In 2015 I broke the Guinness World Record for the Longest Kitesurf Journey while raising money for MND research.
Hi, I'm Steph, and I've worked at the Association for over seven years, previously in the fundraising team and currently as National Care Manager. I currently oversee our grants programme, which offers financial support to people living with and affected by MND.
Before I joined the Association I couldn't even jog around the block but I completed my first #TeamMND marathon in 2018 and haven't stopped running since, although since becoming a mum I am more of a 5k buggy runner!
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.
Find out more about the Association’s inclusion work.
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]
You can listen to all previous episodes on your chosen podcast platform. You can find out more about each episode and read the transcripts on the page below.
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.