Episode 22: Sally Light - Reflecting on 10 years as CEO
“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.
Episode 21 - Kev's Ultra 7 in 7
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 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 Sinfield.
Episode 20 - NHS Continuing Healthcare
NHS Continuing Healthcare (CHC) is a complex subject, and one that is often misunderstood.
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, whose husband had MND, join us for a frank discussion about their personal experience navigating the system, and share some tips for those going through the assessment process.
For more information and support, please visit:
Episode 19 - Travelling with MND
In this uplifting episode Steph is joined by Ken Blackburn, 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.
Episode 18 - Your signature is more powerful than you think
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 gifts in Wills glossary, 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 611799 or email us at email@example.com
Episode 17 - Misha Grimes
Beck is joined by Misha who lost her Dad John Grimes to MND in August 2021. Misha became a carer for her dad during his illness.
In this emotional but uplifting episode, Misha talks to us about the journey her and her family have been through since John’s diagnosis until now, nearly a year since he died. Exploring topics such as denial, acceptance, the pandemic, being a carer and celebrating the man that her dad was.
Episode 16 - LGBTQ+ Pride Month
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. 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.
Episode 15 - Friendship
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.
Episode 14 - How campaigning works
In this episode we are joined by chair of the All-Party Parliamentary Group on MND, Andrew Lewer MBE MP, who discusses how he raises the profile of MND in Parliament.
We are also joined by Campaigns Volunteer Sue Heal and founding member of the Patients United 2 End MND group Nicola Waters who highlight the different ways they have gotten involved in MND campaigning.
From signing petitions to knocking on the door of 10 Downing Street there are lots of different ways to get involved.
If you would like to keep up to date with our campaigns, you can join the Campaign Network for free.
If you have been inspired by this episode and then find out more and sign up to become a dedicated Campaigns Volunteer.
Episode 13 – MND Think Tank and I Will Always Be Me storybook
Becky is joined by Nick Goldup, Director of Care Improvement at the MND Association, and Stuart Moss, Head of IT Innovation at Rolls Royce, who together form part of the MND Next Generation Think Tank. In this episode, Nick and Stuart discuss how the Think Tank came about, who is involved, and how tech giants are collaborating to create solutions for issues facing people living with MND.
We also get to hear from Mike, living with MND, his partner Mary, and Diana, who is also living with MND. Together they tell us about their experiences of using I Will Always Be Me to bank their voice.
Episode 12 – Home Adaptations
Becky and Chris are joined by Jane Smith, a Specialist Occupational Therapist, and Tom, who is living with MND, and his wife Alice to talk about home adaptations. Jane discusses work she’s been doing on the Act to Adapt campaign, which aims to ensure councils are meeting the housing needs of people with MND. To get involved in the campaign, visit the Act to Adapt Hub.
We also talk about grant support provided by the Association. Find out more on our website.
With thanks to the MyName’5 Doddie Foundation, the Darby Rimmer Foundation and Challenging MND for generously supporting the MND Association’s grants programme.
Episode 11 - Fundraising
Fundraising is key to the work of the MND Association. In this episode, we chat with Jez, Tamara and Matt – all three are inspirational fundraisers for the Association. They’ve raised and are still raising money to help people living with motor neurone disease and their families.
In this episode, Chris chats to all three as they discuss their challenges ranging from the London Marathon, a nationwide cycle and 50 different challenges in 12 months. They chat about the best bits, the tough moments and why it’s so important to fundraise.
Episode 10 - International Symposium on MND / ALS
The International Symposium on MND / ALS brings together some of the finest minds in MND research from across the globe to share ideas, collaborate and network, all with one aim – to understand the causes and to find effective treatments and a cure for the disease. The 2021 event was the 32nd, and the second virtual Symposium, organised by the MND Association. Discover the history of the Symposium, what it takes to beam it to 1500 delegates in 44 countries, and what we learnt at this year’s event.
Episode 9 - Dating after MND diagnosis
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.
Episode 8 - Working and MND
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.
Episode 7 - Managing emotions
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.
In this episode, 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.
This episode contains mental health themes that some listeners may find upsetting.
Episode 6 - Finding your way when someone you love dies from MND
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 losing loved ones to MND, what they have learnt and how they are now determined to use their experiences as a force for good.
This episode contains themes that some listeners may find upsetting.
If you need support with bereavement, please visit our Bereavement Support page
Episode 5 - MND Research
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 section.
Episode 4 - Voice banking
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. A special thank you goes out to Credit Suisse UK who funded the voice banking programme through our charity of the year partnership with them in 2017.
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 voicebanking equipment and to Credit Suisse which funded our voice banking pilot scheme.
Episode 3 - Volunteers' Week
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.
With thanks to The Netherby Trust for generously supporting the training of new volunteer Association Visitors.
Episode 2 - Family Support
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.
Since we recorded this episode with Megan, her dad, John, has sadly died. We are grateful to Megan and her family for giving us permission to continue sharing this episode.
Episode 1 - Kevin Sinfield
Steph and Nick talk to Kevin Sinfield about how his friendship with Rob Burrow led him to take on the mammoth task of completing 7 marathons in 7 days, in turn inspiring hundreds of supporters to take on their own 7 in 7 challenge. They're also joined by Jonathan Griffiths who is living with MND. Jonathan is a big rugby league fan and shares what it has been like to see greater awareness of MND thanks to the efforts of Rob and Kevin.
Read our latest news story and find out how the £5.7 million invested into MND research will be spent - thanks to Kevin and you.
This episode was recorded remotely while COVID-19 restrictions were in place. Please bear with the occasional technical glitch.
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 firstname.lastname@example.org
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.