Today is global MND awareness day, where we honour the researchers, volunteers and supporters who are looking to make a difference.

We spoke to David Setters, who lives with MND and is a patient representative at the UK MND RI. He works with other patient representatives to ensure that people with MND are at the front of everything we do at the institution.

He talked to us about why he became a patient representative, the importance of research and what advancements give him hope for the future.

Thank you for chatting to us David. First, what did you do before MND? Can you share your story about how you were diagnosed with MND?

I was Managing Director of a publishing and events company in the international financial markets and a business development consultant in the same markets. My diagnosis was slow and took about 2 years from first symptoms, which was a cramp in my hand when turning an ignition key. It was not a complete shock when MND was confirmed because of the gradual diagnostic pathway, which excluded other potential conditions.

What role have your family, friends, and caregivers played in your journey with MND? Can you talk about a time when support from your community or a support group made a significant difference?

My family and friends have been extremely supportive, especially with respect to supporting fundraising initiatives and ensuring that I can have as “normal” a life as possible. Coming together as a team with other like-minded patients, carers and volunteers over the years to bring about change in a constructive way has given me a sense of purpose. This has encompassed campaigns on access to communications equipment, benefits, local specialist nurse practitioners, continuing healthcare funding (CHC) and, most importantly, greater funding for research and access to treatments.

Why did you want to become a patient representative? Why is this role so important?

There were two main drivers. First, wanting to find meaningful treatments and, ultimately, a cure for younger people living with MND, often with young families. I could not think of anything worse than having a son or daughter diagnosed with it. Second, manageable “survivor guilt”. I feel fortunate to have had a slowly progressive form of MND and to still have my voice. It feels like a duty to make it heard on behalf of other members of the community who are not so lucky.

I understand that you, along with Lee Millard, were deeply involved in the United to End MND campaign. What made you want to help create and work with the UK MND RI?

Essentially, it’s a belief that if we could get the best MND neuroscience brains in the country together and ask/encourage them to come to a consensus on the best possible plan to accelerate translational research in MND, then we will more quickly arrive at meaningful treatments and, ultimately, a cure.

How do you feel about MND research? What advancements have you found particularly promising?

Given my fortunate longevity with MND I have witnessed exciting developments in the discovery of targets as well as potential therapies. The arrival of Tofersen, while probably not directly relevant to me as an individual, is hugely exciting in that it shows pathways to different forms of MND to become treatable. The scientific confidence in the MIROCALS trial, that low-dose interleukin-2 may be able to delay death significantly for a quite large cohort of patients is also encouraging. However, I am also aware that we may be disappointed! The increase in funding from the government, as well as the charity sector, is also a cause for optimism.

What area do you feel is the most important area that research should be focused on?

The rationale behind the Institute, as explained during the United to End MND campaign, was a focus on TRANSLATIONAL research, taking recent discoveries in core science and starting to apply minds to treatments for newly discovered targets and processes. This does not mean that we can ignore core science, but given the almost complete lack of meaningful treatments, we must translate knowledge gained in recent years into therapies, as quickly as possible.

What do you believe are the most crucial things people should understand about MND?

Firstly, that it’s a rapid progression for most people, so that care needs are put into place quickly. Secondly, its complexity in terms of affecting so many different areas of functionality and therefore the need for a large team of health professionals and, thirdly, the fact that MND is an UNMET need and in urgent need of meaningful therapies.

Is there a piece of advice or a message of hope you’d like to share with others who are newly diagnosed or living with MND?

I really don’t like to give “advice” as such. Everybody takes their diagnosis differently and lives in different situations. It’s easy for me to say “have a positive mental attitude etc” because I am naturally a half glass full person, but I totally understand that others are not so lucky. All I would say is try and reach out to others in the community to hear their experiences and to share your own. You should not be alone with MND, and you may benefit psychologically/emotionally from sharing with others.

How has your outlook on life changed since your diagnosis, and what keeps you motivated?

Just as in your working life, when you will almost certainly have changed things even if only in a small way, you can effect change by working constructively together with like-minded people. Even though planning and preparation are important, with MND you must be especially urgent. There can be no unnecessary hanging around with a disease that kills 50% of those diagnosed within 2 years. Seeing that by working together we can really make a difference.

What message would you like to share with researchers and advocates working to find a cure and improve the lives of those with MND?

Very simply, keep collaborating and keep accelerating! Don’t lose sight of the interim and ultimate goals.

Thank you so much for sharing with us David.

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