A few months ago we received an email from a young researcher called Amanda Dean who is working towards a PhD and wanted to know if we could help spread the word about her project on voicing the views of people with MND.
After checking that the project had been ethically approved (to make sure the safety of participants) and that we were happy with the project, we gave Amanda the thumbs up and told her that we would be happy to help her find participants.
After putting an ‘advert’ for Amanda’s project on our how to get involved with research section of our website, we then collaborated with DeNDRoN (Dementias and Neurodegenerative Disease Network) to send her project information out to over 500 people with MND who have registered their interest in taking part with MND research.
Amanda then played the nail bitingly tense waiting game to see if anybody was interested in participating…
Talking about how she felt to step into the world of MND research, Amanda recently told us that:
“At first I couldn’t help but wonder how I would be received as a researcher in the MND community, and had no idea what the response would be to asking people to tell their story to a stranger. My worries were unfounded.
“What I discovered was a community that was welcoming, open and keen to offer assistance and contribute to research in any way they could. It has been overwhelming how many people have acknowledged the fact that nothing can be done to considerably change their circumstance in life, but that their input to research may help others in the future. The bravery displayed in knowing their own position yet still wanting to actively reach out and do something to help others is truly humbling.
“Staying mindful of this makes me realise that I am hopefully helping these people to collectively make their voices louder, so that in the future others will listen, some will gain hope, and many will learn that MND is not just about the disease, but about the person hidden behind the disease that matters too.”
So far, 80 people (and still rising!) have contacted Amanda to ask if they can take part to voice their unique views on MND. The response so far has amazed us all in both the sheer volume of participants as well as the number of inventive ways that people with MND have decided to share their views and opinions to her. This is because as well as people ‘telling it like it is’, people are also sharing their experiences through creative means such as poems and stories, which is truly inspiring for a research project!
Giving people with MND an opportunity to take part in research is extremely important to us. So, as well as a quarter of the research projects that we fund having an element of participation for people living with MND, we are also extremely pleased to be able to spread the word of other projects that need participants to push their research forwards.
