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 27 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’m Karen Lightly and I live in Selsey, West Sussex. I am a single parent to 9 year old triplets – 2 boys and 1 girl. Logan has DMD, my daughter Loxie is a carrier and my other son, Jaxon, is unaffected. I also have a 27 year old son, Toby. I work part time adjudicating parking ticket appeals. I’m very pleased to join the DFSG committee as I’ve been really well supported by the charity and now feel I am in a position to give something back.
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 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 love walking my dogs, going to the gym or having the occasional horse ride.
I live in Essex with my husband, and I am Mum to Jonty, who was diagnosed with DMD in 2019 at the age of 4. Jonty has an older sister and a younger brother who, as is typical for siblings, show great kindness and thoughtfulness towards their brother. I work in London, on Trusts and Estates, and I love my job! Recently, I became a member of the DFSG committee, and I look forward to helping the charity with its plans and activities.
I live in Rye, East Sussex, with my 22 year old daughter and my son Daniel, who is 20. Daniel 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 and on the holidays.
Sam’s profile will be added shortly!
I live in Rushden, Northants, with my husband Dougie, my two children, Connie and Albert, and our dog Moxy! I am originally from Kent where I met Dougie, who was posted there while serving in the British Army. Albert was diagnosed with DMD in November 2018, when he was three. We still feel very new to it all with each stage bringing its own challenges, but it’s definitely made us stronger as a family and we deal with each new challenge together. Over the past few years I have worked as a Finance Assistant for a couple of local charities. I am very excited to start my new venture as Fundraising Officer for the DFSG, and becoming involved with the amazing things you do for the DMD community and their families.