How old are you and where were you born? I was born in Manchester, England in 1958.
Where do you live today? I live in Leicester, in the East Midlands of England.
Do you have family/husband/kids? I’m married to Paul and have a stepdaughter, Emily and two grandchildren who re now 6+9. My mum lives nearby and recently turned 90, and I have a sister who lives in California.
What do you do for a living? I’m a Project Manager in the National Health Service, but will leave at the end of June.
Do you have any (special) hobbies and/or interests? I’ve always enjoyed sewing and am going to do a course in Fashion Design in the autumn.
What is your relation to FSHD? I try not to let it define me.
Which organisation do you represent at FSHD Europe? In the UK we have an FSHD Support Group which works with Muscular Dystrophy UK. I’m a member of the Support Group and a Trustee of MDUK, so both.
What positions do you hold at FSHD Europe? Vice-President Organisational Development: I see myself as responsible for looking after the internal workings of the organisation.
Life itself and FSHD
How long have you been dealing with the topic of FSHD? My sister was diagnosed in 1988 and I was diagnosed soon after so I’ve been aware of it for a long time.
What do you hope to gain from your work at FSHD Europe, but also in your national patient organisation? Personally it’s really interesting (and sometimes challenging) to work with people from different countries and organisations and I feel I am learning a lot from this experience. I’d like FSHD Europe to be seen as the go-to organisation around FSHD in Europe and, as treatments become available, to really speak out for patients to ensure access to treatments.
Which moment of your life would you most like to frame because it was so beautiful? Ooooh, that’s difficult. Probably a lovely place with the right people.
What makes a day (for you) a good day? Great company and interesting things to do or learn.
What criticism in your life has really brought you forward? Someone who helped me understand how I can appear to other people when I’m in a hurry – there are times when I need to slow down and recognise that other people are moving at a different pace to me.
How has your life changed with the pandemic? It’s got duller – I miss seeing friends and going places. I’m looking forward to going to an exhibition or similar with friends and having a good natter.