My post is the only paid role within the charity, covering a myriad of tasks and I have been involved with the DFSG for over 20 years in a variety of roles. I have been a trustee at MDUK and am currently a trustee at Genetic Alliance. I liaise with the other Duchenne charities, am involved in many advisory groups, including advocacy for patients, campaigning in Parliament, advising on a clinical trial and supporting our families. I had a son with Duchenne who passed away aged 27 in November 2019. I am very proud of all the work that the DFSG does and how it has evolved over the years.
My family has been closely involved with the DFSG since my younger son Michael was diagnosed 27 years ago. I am the Chairperson of the DFSG Committee, look after the membership lists, and have liaised with MDUK over the years. I recently retired from being an NHS GP and we live in rural Kent. Two of my children live in Australia so we have to travel a lot!
Vice-Chairperson and Editor
I live in West Sussex with my 25-year-old son, Matt, who has DMD. For many years I was an English teacher in secondary schools and special schools. I first became involved in the Duchenne Family Support Group in 2001, when we attended the DFSG annual event at Bewl Water in Kent. I am currently the Editor of the Duchenne News, Vice-Chairperson of the DFSG Committee and an event organiser.
I’ve recently become a committee member of the DFSG. I have a son called Zack who is 21 and has DMD with a learning disability. I also have a daughter called Lauren who is 19 and I have a younger son, Daniel, who is 10. I have a very supportive husband called Keith. I used to be a healthcare assistant at Southend hospital. I’m pleased to be on the committee and look forward to helping anyone who needs it.
I live in Hampshire and have two sons with DMD aged 15 and 12, a daughter aged 9 and a nephew aged 13, who also has DMD. Our boys were diagnosed at the same time and we have no family history. I think it’s lovely to be able to bring those living with Duchenne – parents, siblings and other family members – together in a positive way. I joined the committee to help continue this support for those families.
Hi I’m Karen, Mum to 9 – 3 birth, 2 step, 3 adopted and 1 on a Special Guardianship, and married to Alan. We live in a little village near Richmond, North Yorkshire, which we love. Joshua, who was originally one of our foster children, was diagnosed with DMD at 21 months and we decided to adopt him not long after. I’ve learnt to have as many adventures as possible and not let Duchenne define you.
I am Paul Chandler, husband of Fleur and dad to Rowan and Dominic. Dominic was diagnosed with Duchenne 13 years ago and is now 15. Over the last decade I have fundraised and helped out with the DFSG and met some amazing families along the way. I work full-time and, as Dominic is now off to college, this allows me a little more time to get involved with the DFSG. Hobbies include walking the dogs, running (slower than I used to!) and generally being outside.
I am Sarah Wright and I live in St Leonard’s on Sea, East Sussex. I am a single parent to two grown-up children. My son, who has DMD, is 25 years of age and I have a daughter who is 23 and two granddaughters. For the last 4 years I have worked part-time as a Clinical Secretary at my local hospital. I have been a member of the DFSG for about 17 years.
I am Cathy and I am from Suffolk and have only very recently joined the DFSG committee, although I have been a member of the DFSG for a number of years. I have been on the receiving end of the work of the DFSG with many wonderful trips to France and Norfolk. I have a daughter Izzy 23, Miles 20, who has DMD, and Freddie who is 11.
I live in Rye, East Sussex with my 21 year old daughter and my son Daniel who is 19 and was diagnosed with DMD at the age of 5. He is now at our local college doing an Art course. I’ve been a member of the DFSG committee for a few years now and enjoy fundraising and meeting families on the days out/ holidays.
I live in Goring-By-Sea on the Sussex coast with my three children, a daughter of 24 and two boys with Duchenne aged 13 and 18. I used to work for the NHS but gave up my job to become full time carer for the boys. I joined the DFSG committee in 2020 and look forward to helping others within our community. I Iove walking my dogs, going to the gym or having the occasional horse ride.
I live in Portsmouth with my family. I have three boys. The youngest boy, who is aged 11, has DMD. I became involved with the DFSG as we enjoy spending time together as a family and meeting others like ourselves.
I live in Ashford, Middlesex and I have been a member of the committee for several years now. I have enjoyed taking part in events to raise awareness and funds and I have recently taken part in my first “virtual” marathon. My son, Dan, who has DMD is now 21 and my eldest son, Adam is 23.