Meet our volunteers: Stephen Goulden MBE
Stephen Goulden MBE attended the first British Retinitis Pigmentosa Society (BRPS) meeting in 1977. He describes his involvement with the charity and with inherited sight loss as follows:
“When I walked into my first British Retinitis Pigmentosa Society (BRPS) meeting in 1977 I could never have imagined how research into genetics would lead us to where we are today. Thanks to the wonderful work carried out by research teams, partly funded by Retina UK, I now know my inheritance pattern (X-linked) and the name of the faulty gene causing my sight loss (RP2).
“At that time the main focus of BRPS was on raising money to fund research into retinitis pigmentosa (RP). A local branch system was set up to facilitate fundraising and to provide information and support for people with RP and their families. I was a member of the North-West branch.
“It became obvious to me and many others in those early days that there was something missing. We asked members to ‘shake’ a collection box or run a coffee morning but we didn’t understand that many of our members wanted to talk about their diagnosis, as well as issues around driving, employment and how RP might affect their families. I felt we needed to offer people a chance to talk, to provide speakers from eye hospitals, local sight loss charities and social services. As a result, a National Welfare Committee (NWC) was formed.
“This brings me to my ‘Road to Damascus‘ moment! When Mary Guest spoke at our branch AGM in Blackpool, she asked for volunteers to act as Welfare Officers and I felt myself being pulled to my feet. Our branch had two other fantastic Welfare Officers. Carole Holmes and Beryl Duggan, both of whom worked tirelessly either fundraising or supporting our members.
“Bob Gould invited me to join the NWC and when we set up the telephone helpline, I became responsible for answering calls, recruiting volunteers and organising training events. I would personally like to thank all of the wonderful volunteers who gave their time and commitment to the BRPS.
“In 2007 the BRPS recruited David Head as Chief Executive and soon after the charity became RP Fighting Blindness. Under David we became more professional, setting up a website and recruiting a team to coordinate fundraising and manage our volunteers. When he moved on, Tina Garvey took the helm and moved us to the more inclusive name of ‘Retina UK’. Happily, for me, Tina introduced local peer support groups, which filled the gap left when the regional branches closed.
“I continue to volunteer on the Helpline as a member of the email team, answering questions from all over the world.
“I have been lucky enough to attend Retina International events in Switzerland, Canada, Germany, Italy and France, meeting people with inherited sight loss from all over the world.
“Retina UK, RP Fighting Blindness and the BRPS has been part of my life for over 49 years and I’m very proud of what we’ve become. Our website is second to none, we have recruited volunteers of all ages and expertise and they are supported by our wonderful office team, delivering information and services to our community and raising record amounts for research projects.
“I would encourage anyone considering becoming a volunteer for the charity to join our team, either fundraising or helping to support people living with inherited sight loss.”