For people who want to be more involved and help us evaluate the research that we fund, we have a Lay Research Panel. The panel currently has 11 members, comprising of people directly or indirectly affected by muscular dystrophy or a related neuromuscular condition, as well as a physiotherapist, an occupational therapist and a scientific advisor. The panel meets twice a year, in autumn and spring, to review the grants programme and discuss any grant applications that we have received.
The panel plays an important role in our research funding process and ensures that not only are we funding top quality research but also that it is relevant to people with muscular dystrophy and related neuromuscular conditions. The panel has devised an application form for the scientists to complete when applying for a grant, which contains all the questions that they feel are most important to them. They consider and discuss each application carefully, not judging the science, but prioritising each application based on the benefit to people with muscle-wasting conditions.
The panel provides feedback on all the grant applications to the Medical Research Committee, our committee of scientific experts. Two members of the Lay Research Panel attend the Medical Research Committee meetings to ensure that this feedback is taken on board during the discussions. They also have voting rights so will have a direct influence on the grants that are funded.
If you are interested in getting involved, please email us at firstname.lastname@example.org or call 020 7803 4812
“Prior to Murray’s diagnosis, my mindset was one of ‘going with the flow of life’. But after hearing those devastating words diagnosing Murray with Duchenne muscular dystrophy, my outlook changed to fight for improvement to his quality of life. The selfish ambition to help our son has expanded to include all affected by muscle disease. Jane and I are graced with a set of tools or skills that enable us to help make change happen. Supporting Muscular Dystrophy UK in guiding the spending on research is a key element in the welfare of our patient group.
Muscular Dystrophy UK is very particular about ensuring that help in decision-making comes from the grassroots upwards. Seeing the novel ways in which science is making a positive impact on our lives is both uplifting and rewarding. Reviewing the grant applications is challenging, but an experience that I would not miss for the world. I am honoured to work with the charity and the panel.”
Panellist Mark Field describes what it’s like to be a member of our Lay Research Panel.