What’s it like to be part of our Grant Review Advisory Boards as a person affected by MND? Jennie’s experience.

06 November 2024

“We are all important cogs in the same machine, driving forward to find effective treatments and ultimately a cure.” 

Here at My Name’5 Doddie Foundation, we want to do everything we can to make sure that we fund the best research. Our review process allows us to do this by bringing together committees of independent experts in the field including academics, clinicians, industry representatives and people affected by MND. Having reviewers on our panel that are affected by MND allows the MND community to be represented, provide their invaluable feedback and be active in our research funding direction.

Last month, in rainy London, our Discovery Network Advisory Board met and discussed the exciting applications we received for this year’s Discovery Network 2024 grant round. The Discovery Network Grant Award is a new scheme that will enable multi-disciplinary, multi-institutional teams to apply for £1 million over 3 years. This award will encourage collaboration and Open Science practices between teams with bold ideas and innovative approaches to further our understanding on MND biology, with a focus on identifying new therapeutic targets. The Discovery Network panel meeting for the final round of reviews provided a great opportunity to have a chat with panel member, Jennie Starkey, who is living with MND, or as she puts it – “MND is living with me!”  

This is Jennie’s first time as part of an Advisory Board, and despite being apprehensive about understanding the scientific discussions today, Jennie said she felt instantly comfortable and didn’t feel worried about asking questions. She commented that everyone has been so kind, accommodating, and mindful that there are people with MND here today. We wanted to hear more about her experience being involved with the Foundation and what it was like being part of the Discovery Network Advisory Board.

Why did you want to get involved with the Foundation?

My Name’5 Doddie Foundation brings a young and dynamic energy into the MND community. The foundation is very research focused, we need research to find a cure for MND and I know that almost all funding from My Name’s Doddie will go to research, so I have been attracted to the charity for that reason. The foundation does what they say they will do and have such innovative ideas for research. They are very forward-thinking and make things happen, for example, the Discovery Network Award has only been a year in the making, and we are already able to fund projects.

What’s your role on the Discovery Network Advisory board?

I reviewed seven projects at the Expression of Interest stage, the first round of review, the lay summary of the projects really helped as it allowed me to understand the project and score it. I’m also attending the panel meeting today to assess all the applications that were brought through to the next stage. Along with the other people affected by MND on the panel and the research experts, I gave my vote to decide which projects will be recommended for funding.

I think being on the Discovery Network Advisory Board allows me to give a patient perspective, I have got a bit of a research background, and I realise how long it takes, especially in the medical field. Even still, being a part of the Discovery Network Advisory Board has really helped me to see the bigger picture of time scale and be realistic in how long robust research takes. Projects ask for 3 years funding to identify potential new drug targets for MND for example, but it will still take time after those 3 years to get it to clinical trials and patients. Having this experience on the Discovery Network Advisory Board will help me explain this to other members of the MND community and let them know that My Name’5 Doddie is doing great work in driving MND research forward. It’s like planting seeds now for trees that will grow in years to come, I won’t get to see the benefits, but I want there to be a cure for people in the future.

How have you found it being involved in the Discovery Network Advisory Board?

It has been really welcoming; I’ve felt comfortable and accommodated from the start by everyone at the Foundation and on the Advisory Board. It can be so difficult as a patient to rely on what you hear in terms of timescales for translating research to patients. Hearing how medical research works and what is involved has really helped me understand the process more. It’s also great to see that there is an increased collaborative drive in MND research, working together on things like standardised models will get everyone singing from the same hymn sheet and hopefully move things forward quicker. Participating in the Discovery Network Advisory Board has shown the integrity of the Foundation, that the money raised for My Name’5 Doddie is used wisely, and they will only fund the best research. It’s great to know that the money raised from fundraising is being used in a trustworthy way.

At a personal level, being involved in this has given me hope, that going forward people with MND will have treatment options. For me, being involved with My Name’5 Doddie Foundation and taking part in this process has allowed me to see with my own eyes that things are happening. Working with the Foundation feels like we are all part of the same community, from children participating in fundraising events, to the researchers and the people affected by MND. We are all important cogs in the same machine, driving forward to find effective treatments and ultimately a cure.

We are extremely grateful to Jennie for providing insight into her experience on the Discovery Network Advisory Board, and all the people affected by MND that participate in our review process.