How long have you been in your role?
Eight years. I started Wolfram Syndrome UK first as a support group with my husband because there was no one to support us after our daughter’s diagnosis, or the few other families we had found in the UK. Three years later we became a registered charity.
What is the best thing about your role?
Connecting affected people or families with anyone else close by so that they aren’t dealing with things alone, especially when they are fairly new to their diagnosis. Also being able to connect with the researchers and help to drive them on with their research on finding a treatment and, ultimately, a cure.
What is your charity’s main income stream? What are the positive aspects of that and what are some of the challenges?
Public donations. We hold several fundraising events a year with entry fees or tickets. Some of our members get involved by taking part in sponsored challenges to raise funds for us, or by helping to put collection shakers out in places such as pubs and other high-street businesses to collect any loose change. Some of the positives are that, with a sponsored event, details can be put on the person’s online sponsor page, which can then be easily shared with friends, family, work colleagues and on social media. The media are often at organised sponsored events and, if you have a stand-out costume or happen to be in the right place, you can get noticed and perhaps have a picture in the paper or on their social media pages. As a small, unknown charity the challenge is getting heard or noticed over all the larger charities and organisations.
What did you want to be when you grew up?
When I was a lot younger I wanted to be a nurse, although I didn’t like the sight of blood so I was leaning more towards radiography. In my teens I had dreams of owning and running my own pub or hotel. Now I deal with all the day-to-day stuff of running a charity, producing its newsletter and keeping the website up to date, as well as being a full-time carer for my daughter and tending to her daily medical requirements. So in a way my younger childhood ambition has come true, but without the full range of medical training
Do you tweet and why?
Yes. We use it as a way of trying to promote fundraising events and raise awareness of our charity and the work we do. It’s also a way of acknowledging our supporters and their achievements in fundraising for us. And we can thank companies that have supported us by donating prizes for events or giving monetary donations.
Tell us a joke
This is from my daughter: What is red, black and white? A sunburnt penguin.