As well as caring for Dregan full-time, Peter and Emma hold a number of voluntary roles for MDUK. They also raise money through their Family Fund and support other families locally and around the UK. They represent the myotonic dystrophy community in various European research and care organisations. Last year, Peter won the MDUK President’s Award for Outstanding Achievement.
“Pete has dedicated the last 11 years to myself and the family he inherited, and his life to raising awareness of muscle-wasting conditions,” says Peter’s wife, Emma. “It has been his choice to dedicate practically all his time to help others. As long as Pete has his health, and a difference is being made to those who need it, I can’t see him stopping anytime soon.”
Peter’s volunteering ‘journey’
Peter’s involvement with the charity began in 2014, after Dregan’s diagnosis.
“We’d never heard of the condition,” explains Peter. “We didn’t know anything about it…The paediatric neurologist who diagnosed him said, ‘Don’t go home and Google it’…so we did.
“When we got the diagnosis and realised how serious it was, it was a big hit.”
“It was upsetting that the implications for us were enormous…you realise you’ll be looking after him for the rest of his life and it was a pretty grim looking future at the time. It was a big shock and it was a lot to take in, but we’re the kind of people that like to know information, so we jumped into it and tried to find ways to improve Dregan’s future. That’s why we got in touch with MDUK.”
Not really knowing where to turn after Dregan’s diagnosis, Peter and Emma were spurred on after watching a local news report of a mum, Sarah Ruane, raising money and awareness for her son who had congenital myotonic dystrophy. They got in touch with her and from there spoke to other families before finding out about us.
“Over the coming weeks and months, contact increased,” says Peter. “Another mum who has a child with congenital myotonic dystrophy suggested that we could start up a Family Fund with MDUK. [We] had meetings in London and it just seemed like a no-brainer because we were thinking about the difficulties of raising funds and…the legal aspects of it. MDUK, through the Family Fund, do all that and leave the families to concentrate on raising the money. Since then, we’ve been involved in everything to do with the charity that came along.”
With our help, Peter and Emma set up the Congenital Myotonic Dystrophy Fight Fund with three other families to raise money. With an initial ambition to raise £75,000, Peter, Emma and the other families smashed their target and have so far raised more than £120,000 for research into myotonic dystrophy.
Peter and Emma also began attending conferences to find out as much as they could about myotonic dystrophy and learn more about care and support.
“We thought…we need to know what’s available out there – what’s best practice,” says Peter. “At the moment there are no treatments.”
“It’s quite a serious condition – it’s life-shortening – so what can we do to change that? That’s the motivation for it all.”
Getting involved in research
It was from these conferences that Peter discovered more opportunities to support the work we do. He applied to become a member of our Lay Research Panel, which is involved in choosing which research projects should be funded by us every year.
“It seemed like an interesting thing to do,” says Peter. “I filled in the form, got really positive feedback and started the fairly lengthy process of being included. I went down and attended one of the get-togethers as an observer and was proposed as a member and accepted. It’s been a great experience.” Peter, who was recently elected Vice Chair of the panel, enjoys being involved although remembers the learning curve involved at the start.
“When I first signed up for it I assumed it was reading a couple of paragraphs for each application. By the nature of the Lay Research Panel name, you would imagine you it would be written in such a way that anybody could understand it, but it’s absolutely not that at all! By the time I joined, we’d had a couple of years of going to conferences and educating ourselves in the condition and we knew quite a lot, but I still felt out of my depth when we got our first ones to look at.
As time goes on and we look at more of the research proposals…you get to know about the conditions, and you get to know the language and how to read them, but a lot of them are very scientific. You have to do a lot of research just to simply understand what they’re talking about in the proposal, which is hard work, but it’s really interesting and rewarding.”
Helping us shape our content
And then, in 2017, a new opportunity arose to join the MDUK Content Advisory Group and help shape the tone, language and information in our publications and on our website.
“Both myself and Emma signed up for that,” Peter says. “It just seemed like a logical thing to do. It basically gives us advance notice of publications that are going out and the opportunity to have an input to make sure they’re accurate and represent the community.
“We’re an interesting cross section of people – there are health professionals, there are people with different conditions and with different skills. And we have some good discussions about what is being proposed in terms of press releases, leaflets, pamphlets, booklets, guides and the website.
“And it’s a good thing to be part of, to hear feedback from a wide variety of people who all face different conditions. It’s been really useful for us as well, just to have the opportunity to make sure that the information that goes out to the community is accurate because what might seem like a potentially very trivial inaccuracy or omission can actually have quite serious consequences for the people with this condition.”
“It’s just a great opportunity to actually have an input as a small user of a large charity that represents a lot of people in the UK.”
Recognising Peter’s achievements
Last year, Peter was honoured with the Richard Attenborough Award for Outstanding Achievement – one of our President’s Awards, which was presented at our National Conference.
Peter is humble about his accomplishments: “It makes me feel good that I can have that positive impact. It’s all driven by trying to find out what’s best for Dregan. At the end of the day, he’s my son. He’s my stepson, but he’s my son. You know, you do those things for your family, don’t you?”