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This week’s blog was written by two members of our 2021-2023 Patient Group Engagement Committee! Get to know Chris Bedford Gay and Craig Mitchell now, and keep an eye out for more ‘Meet the Team’ blogs from our new committee members in the coming weeks.

Get to know Chris Bedford Gay

Why/how did you become involved in rare diseases?

In 2009, my eldest son, Oliver, was diagnosed with the ultra-rare genetic condition fibrodysplasia ossificans progressiva (FOP). He was 1 year old at the time. FOP is a condition that impacts between 1 – 2,000,000 people worldwide. I became involved initially in fundraising to support a research team at the University of Oxford, a team which we continue to support.

From there, I joined the board of the IFOPA, a USA based international FOP association, and not long after founded the UK charity FOP Friends. I continue in all these roles, and a few tagged on along the way. As with many who enter this rare disease patient organisation world, I do this all alongside my day job and the Dad job of looking after Oliver and his two younger brothers, Leo and Harry.

Why did you choose to join our Patient Group Engagement Committee?

Although I will remain fully involved in the FOP community and continue in many of my FOP roles, I am taking a small step back from being a board member of the IFOPA as part of a board rotation. Never one to take it easy, when I saw the opportunity to give back to an organisation, Findacure, that has been increasingly helpful and supportive to us and many other rare patient organisations I felt it appropriate to step forward and try to help in any way I can.

As such, I was very pleased, though a little nervous, that my application to join the committee was successful. I’m hoping to help alongside the other committee members in guiding Findacure’s programmes of support for all rare disease patient organisations. Hopefully bringing any insights and learnings I have gained since starting my rare journey.

What do you enjoy doing in your spare time?

Spare time? Is there such a thing. Joking aside, my “off-switch” is becoming absorbed in DIY projects at home. I find it helps turn my head off from thinking about anything but the project at hand. But not projects such as painting and fixing, bigger stuff, building things!

Alongside that, I am a long-time member of Manchester Round Table, a social / charitable organisation for men 18 – 45. As part of that, I enjoy many social activities from nights out to hovercraft racing and many things in between. We also run large charity events (firework displays, beer festivals and even Santa sleighs) annually raising ££££s for local good causes.

Back before children, I was a black belt in TaeKwonDo and enjoyed playing squash and badminton; sports I am just getting back into. I also like a good horror or mindless action movie on the occasion I get control of the TV!

Favourite book/movie/tv show? And why?

Book, Andromeda Strain by Michael Crichton.

Movie, Grosse Pointe Blank.

TV Show, Buffy the Vampire Slayer (when I was young), The Boys, Happy! or The Walking Dead these days.

Why? I have not idea, I guess I like what I like.

Get to know Craig Mitchell

Why/how did you become involved in rare diseases?

I have worked for the charity Unique for more than 10 years, first as Operations Manager and more recently as Chief Operating Officer. Prior to joining as a staff member, my family and I became members of the charity when my daughter was diagnosed with a rare chromosome disorder and Unique was quite literally the only source of information and support. Having seen the value of the charity’s work as a beneficiary, I was delighted to join as a member of the team, enabling me to use my skills to benefit others. My role involves overseeing infrastructure, HR, fundraising and other functions to ensure that we can ‘keep the trains running’ and go on providing services to those who need us.

Why did you choose to join our Patient Group Engagement Committee?

As the parent of a young person with a rare genetic disorder, I understand only too well the value of rare disease patient support groups, particularly in helping families understand and come to terms with their child’s diagnosis. This, coupled with my work for Unique, means that I have both professional and lived experience of the rare disease space. Participating in the Patient Group Engagement Committee is therefore a great opportunity to use my skills to help the Findacure team identify and develop projects and services to help and support rare disease patient groups and others.

What do you enjoy doing in your spare time?

Having two teenage girls, one with a genetic disorder, means that spare time is at a premium, but I enjoy running (actual running, not just running around after my children!) and most sports. I also read a lot and enjoy the great outdoors.

Favourite book/movie/tv show? And why?

I love the film ET, partly because it was the first film I remember seeing in the cinema, but also because of the way the alien’s difference is accepted, particularly by the children in the film, who form a strong, unconditional, emotional bond with ET.

Keep an eye out for upcoming blogs that’ll introduce you to the members of our 2021-2023 Patient Group Engagement Committee. Next up will be Christine Mutena and Michelle Conway’s ‘Meet the Team’ blog!

Meet our Patient Group Engagement Committee members: Chris and Craig!

by Guest Contributer time to read: 6 min
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