Meet the Team

Sue Berry
Vice-Chairperson and Editor

I live in West Sussex. My son Matt, who had DMD, passed away at the age of 28 in December 2024. 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.

Jacky Wilde
Committee Member

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.

Karen Lightly
Committee Member

I’m Karen Lightly and I live in Selsey, West Sussex. I am a single parent to 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 an older son, Toby. 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.

Sarah Wright 
Committee Member

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 29 years of age and I have a daughter who is 27 and two granddaughters. For the last 7 years I have worked part-time as a Clinical Secretary at my local hospital. I have been a member of the DFSG for about 21 years.

Laura Elliott
Trustee

I live in Lancing, near Worthing, on the Sussex coast with my three children, a daughter and two boys with Duchenne aged 18 and 22. 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.

Amanda Revell
Trustee

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.

Sonia Richardson
Trustee

I live in South Lincolnshire, 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 pleased to be involved with the amazing things you do for the DMD community and their families.

Lizzie Senn
Fundraising Officer and London Marathon Coordinator

Hi, I’m Lizzie and I live in West Sussex. I work in Internal Communications and have always considered myself a digital storyteller. My best friend, Matt Berry, had DMD. We grew up together and shared so many laughs, adventures, and mischief. He passed away in December 2024, and being part of DFSG now, is very special to me. What a wonderful way to honour his memory by helping other families feel the same sense of warmth and support that he gave so freely to others.