Staff

Florence Boulton

Angela Stringer

I joined Action Duchenne in 2007 having been encouraged to reply to the advert by my son who was living with Duchenne. Just the job for me I thought at the time, put my wealth of experience as part of a Duchenne family to good use. Along the way, I’ve experienced the services, good and bad that includes schooling, house adaptations, social care, care packages, hospitals, dietitians, physiotherapists, hydrotherapy, wheelchairs, going on holiday, attending college and going to university. A lot of the services I’ve had to fight for.

I’ve had the opportunity to see clinical trials become a reality and to give hope for the future when 20 years ago there was none. I’ve met some amazing families who have wonderful stories to tell in their quest to overcome Duchenne.

In 2016 I qualified as a EUPATI fellow, to empower patients with a better understanding of their condition and the drug development process. Following on from that I’ve recently added the role as advocate.

In between the tears there is fun and laughter. I’m here with the Action Duchenne team to help you and together we will find better treatments.

Victoria Edwards

A little bit about me and my experiences. After graduating with a degree in English and Film at the University of Southampton I worked in a specialist school, I then went onto training in learning, development and support services for children and young people while working for a national young persons careers service, before moving on to the position of Youth Worker for a national charity. On the birth of my first child my career changed course to project management for a local independent health and social care organisation. Then five months after my first born was diagnosed with Duchenne, I joined the team at Action Duchenne.

Ravi Mehta

After studying Business Management at Kingston University, I decided to volunteer my time for the next few years working in the charity sector to help other people like me and to gain valuable experience to find paid work. I have previously worked for Muscular Dystrophy UK, Pathfinders Neuromuscular Alliance and with Action Duchenne for some time.

As a person living with Duchenne Muscular Dystrophy, I have an ingrained understanding of how people feel living with the condition and the families that are also affected. I feel that this has put me in good stead to help others.

I’m very happy to be part of Action Duchenne in my new capacity and I hope this can take me on my journey to be a role model for people with Duchenne and other disabilities and to motivate them to get the most out of life.

Alex Berbank

My name is Alex 

Before studying at University, I worked with vulnerable kids who struggled with mainstream education. I was part of a very small team that helped children and young people achieve their full potential, including getting as many GCSEs as possible. I helped the young people get industry recognised qualifications in media production, game development and trade skills. This helped them to get the jobs they wanted and reach their personal life goals. 

After a brilliant three years studying Sports Medicine and Physical Rehabilitation at St. Mary’s University I joined the NHS. In my first role I enabled adults of all ages with reduced mobility, to access the world around them. I saw many patients and people in our care start to start to feel isolated and withdrawn when they were faced with life changing conditions. For many, the situation is overwhelming and I supported people through their grieving process for the life they thought they would have. I believe that initial support is key to overcoming this, whether in the form of casual chats about our feelings or deeper conversations about the big questions we have. 

My career path changed beyond recognition during the Covid-19 pandemic. I moved onto working in critical care and high dependency Covid wards. I found great pride in being there and supporting patients and their families when they felt most isolated and alone. I supported people with illnesses brought on by Covid, which often manifested in cardiac, neuromuscular and respiratory problems. During physio sessions and time on the wards, I talked with patients about their future, their feelings and about any anticipated grief they were experiencing. These chats never made the pain go away but they did make getting through the next day / week / month easier for the people I was supporting. 

After I moved away from the Covid-19 wards I took the opportunity to work with Action Duchenne full-time as the Outreach Officer. This new role is a crucial part of our ‘All-through Support’ project, which is recognised and supported by the National Lottery. I am building connections between; the neuromuscular clinics, Duchenne families and Action Duchenne. If you are new to the Duchenne community, or are looking for support in your Duchenne journey, I will help guide you on your first year and beyond. 

Looking forward to meeting as many of you in person as possible.

Alex Berbank

Outreach Officer 

Mehreen Arif

I have always been driven by my passion and intrinsic motivation to make a positive difference in someone’s quality of life. I have been chasing that moment of ‘eureka’ throughout my scientific career and have been fortunate to celebrate one such success in my 10 years behind the bench. A patient enrolled in our phase 1 clinical trial, evaluating a novel personalised cancer therapy, attained complete tumour resolution post therapy. Once you experience the difference your scientific contributions can make in the real world, you never stop pursuing the next promising direction. 

I completed my Bachelor of Science in Biomedical Science with second class Honours (Upper Division) from the University of Surrey in 2014. Soon after completing my BSc, I secured a position to pursue my PhD studies in the development of Cancer Immunotherapy. During the 4 years in my doctorate studies, I undertook and completed the preclinical in vitro and in vivo work that led to a successful phase 1 clinical trial and generation of peer-reviewed papers. In my subsequent role as a Postdoctoral Research Associate at GlaxoSmithKline, I lead a project in collaboration with academic partners in King’s College London. I utilised my laboratory expertise, partnership building and interpersonal skills to develop and validate a novel technique designed for clinical setting.

Action Duchenne came up on my browser at the end of a long day of searching for the next, exciting opportunity for myself. After watching the ‘It’s all about the why’ video on the Action Duchenne website, I immediately knew I wanted to be a part of this brilliant team. 

I am extremely delighted and proud to be representing Action Duchenne as the Chief Scientific Officer. I will be supporting the Science Education programme and developing research strategy to define the path for innovative and novel research approaches. Additionally, I will be providing support and scientific expertise to the team wherever required. I will contribute to the updating of the Accident and Emergency pack, the registry, webpage and support families. 

I have worked with teams from different areas of the business. My ‘can do’ approach and positive attitude has led to success in every project that I have been a part of. Furthermore, I have an eye for detail and pay careful attention to project planning. I take smart risks to deliver targets on time. I look forward to working with the brilliant team at Action Duchenne and cannot wait to make my impact on the lives of the families facing this diagnosis.

My personal life is as exciting as my scientific career, I have a 3-year-old daughter who keeps me on my toes. We love to explore new towns, try out different banana bread recipes and throw pretend tea parties for all the teddies to enjoy. 

Looking forward to meeting you!

Mehreen

Sadia Hussain

I have always been passionate about working in the non-profit sector and am strongly driven by the value of making a difference. I started my career as a Volunteer Manager with Volunteering Matters and AgeUK East London. I then moved on to delivering well-being services and leading on the delivery of leadership training events, conferences and residentials for teachers working with children from disadvantaged backgrounds. Most recently I lead on change programmes at a national mental health charity Richmond Fellowship. 

In the last few years I’ve also put my study cap back on and completed Post Graduate Certificates in: Systems Thinking in Practice; and Applied Positive Psychology and Coaching Psychology, as well as becoming an accredited Coach. This has really developed my team management and support skills and invigorated my drive for positive well-being in the workplace and out.  

I am so excited to be taking up the position of Head of Programmes and joining the Action Duchenne team. I look forward to contributing to the fantastic support and advocacy the organisation provides to young people, adults and families whose lives are impacted by Duchenne muscular dystrophy. 

Outside of work I like exploring the green spaces in London and beyond, swimming in outdoor lidos (heated!), meditation and spending time with family which includes many nieces and nephews.

Lizzie Deeble

I contacted Action Duchenne in the first few weeks after my son Sebastian was diagnosed with Duchenne in 2016. Their empathy, understanding and advice was a lifeline in a very dark time and they have been an ongoing support to me and my family ever since. I began volunteering for the charity in 2019 and took on the role of Lead Volunteer in 2020. While my main role is being a mum to Sebastian, now 8, and my younger son Toby who’s 5, I have loved the work I have done through my volunteering and have enjoyed developing new skills in copy writing, marketing and social media communications. 

When the part time role supporting the transition project for young people living with Duchenne came up, I knew that it combined the experience I have gained through my volunteering and my previous training and employment in Youth Work. I am passionate about the work that Action Duchenne do and in particular the support they offer to the Duchenne community on every part of their journey. I am so excited to be part of this amazing charity.

Kelly Molkenthin

Dawn Craig

Hi, I’m Dawn, I am super excited to have become a part of such an amazing charity.

My role will be community fundraising and support officer and I am keen to put my previous  fundraising into action with Action Duchenne. 

I have previously been a part of some personal fundraising projects taking part in bungee jumping, going on the local radio  which I really enjoyed and a fantastic experience, raising almost £250K. 

I have previous experience in children’s residential care and in a specialised school setting working closely with children with additional needs including autism, which has been an ongoing passion for me, making a positive difference in young people and their family’s lives.

I am married to Ashley, we have a small football team of our own with 3 girls, 2 boys, a beautiful grandson and two crazy dogs

I look forward to getting to know more the Duchenne community 

Dawn Craig

John Marrin

I’m John and I’m delighted to be joining Action Duchenne as a Science Communication Coordinator. I’m a biologist who specialises in biomechanics and energetics of locomotion and have over 10 years of experience working on various research projects in university labs across the north of England.

I was a late bloomer to the science world, having worked in logistics for 8 years after leaving school. In 2013 I decided to follow my passion for science and embarked on my undergraduate and Master’s degrees in Zoology at the University of Manchester. This decision afforded me many amazing opportunities such as research trips to the Arctic Circle and the Costa Rican Rainforest, where I had the pleasure of turning my morning coffee routine into a high stakes game of “guess the leg count” with some oversized eight-legged roomates!

In 2017 I worked on a research project at the University of Liverpool which focused on developing a non-invasive pre-clinical assessment for osteoarthritis. It was this work that made me focus my interest specifically on movement and coordination. In late 2018 I was awarded a PhD scholarship to research the mechanics and energetic costs of bipedal locomotion at the University of Leeds focusing specifically on thigh muscle function in bipedal walking and running.

During my career as a researcher, I have been fortunate enough to share my work and expertise with students via teaching, with peers at various conferences and in journal publications. Recognising the critical importance of research advocacy and communication in the field of Duchenne muscular dystrophy, I’m now eager to share my expertise in a way that will effect real change and hopefully help to support the Action Duchenne community.

Louise Straw

Hi, my name is Louise, and I am a Mum to three young adults, Lorna (20) Isabelle (18) and Henry (17) The girls are both are both at University and Henry is in Year 13. I recently retired from running a successful family engineering business.

The photo is of myself and my eldest daughter doing the 2024 Robin Hood Marathon in aid of MDUK.
I am delighted to have been given the opportunity to support this amazing cause which is very close to my heart. My nephew, George was diagnosed in 2016. As a
family we have supported the cause by doing various fundraising events.

I am thrilled to have been selected as events volunteer for Action Duchenne, this will enable me to support the cause on a more frequent basis and support all the great work that is being done.