Raising awareness while funding research and support, the Darby Rimmer MND Foundation is helping to change the lives of people living with Motor Neurone Disease and their families.
When former football player Stephen Darby was diagnosed with Motor Neurone Disease (MND), he knew what he had to do next: help other people who were also learning to live with the condition.
“I was diagnosed on 12 September 2018 and from that day really I knew I wanted to set up the foundation,” remembers Stephen. “Being told I had MND and there was nothing that could be done was hard, I wanted to set it up and help others who were in the same situation.”
After Stephen received his diagnosis, veteran, campaigner and a friend of Stephen’s brother, Chris Rimmer, reached out to offer support. Chris received an MND diagnosis in 2015 but sadly passed away on 18 April 2022.
Both Stephen and Chris had the same goals and together set up the Darby Rimmer MND Foundation to attack MND.
The foundation has three main objectives: awareness, support and research. Since 2018, they have been achieving these by holding events, raising essential funds for support grants and donating money to research projects around the UK.
“When you’re diagnosed the doctors don’t have any answers, yet you have so many questions,” reveals Stephen. “You find you get a lot of strength from the MND community and those who are living and battling through it.” Since its launch, the foundation has worked with the MND Association, My Name’5 Doddie Foundation and former rugby player Rob Burrow.
“We’ve been very lucky to have an amazing amount of support so those objectives have stayed the same since we launched,” explains Stephen. “We’ve been able to raise awareness through different events including a football game when we launched which raised over £250,000.
“We’ve donated £150,000 towards the MND Association for grant support, they process grants on our behalf that go towards accessories, recliner chairs, different things that someone with MND and their family might need for daily living.”
Currently, the foundation has also donated more than £650,000 to eight research projects to help find a treatment or cure for MND.
The foundation continues to raise awareness and funds for research, but emotional support and community has always been at its heart.
“I think that people receiving a diagnosis can find support in different ways, some people have support through family and friends but for those who don’t there are support groups out there,” offers Stephen.
The MND Association provides a host of local and national support as well as advice and financial aid.
“It’s massive that you speak to others who are going through the same thing because they can give their advice on what you’re going through and they understand,” stresses Stephen. “The biggest thing I’d say is although you are hit with this devastating news, try and still be positive, try and focus on things you can do rather than what you can’t.
“Having a positive mindset certainly goes a long way.”