ACTION DUCHENNE - Key Persons
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 I saw many patients and people in our care start to start to feel isolated and withdrawn when they were faced with life changing conditions.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.
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
Florence Boulton leads Action Duchenne, a charity committed to improving support for those living with Duchenne and Becker muscular dystrophy and their families. She heads Action Duchenne at a crucial time in which she will form and deliver an ambitious strategy to engage with families, support research and campaign for access to service and opportunities, working towards a world where lives are no longer limited by Duchenne Muscular Dystrophy. From funding research, supporting clinical trials and campaigning for access to building a community and striving for a more inclusive society for those living with Duchenne condition; Florence sees Action Duchenne as a crucial force, promoting the importance of human equality where young people and family can thrive.
Florence began her career in international banking and business investment in Mainland China and Hong Kong, leading client engagement for a portfolio of Hong Kong real estate investments.
After more than seven years in the private sector, and inspired by an interim role supporting students at the Washington International Studies Council, an overseas study programme in Oxford, Florence brought her corporate experience to the charity sector, joining YMCA Milton Keynes in 2002. There she led the organisation's finance, implementing its growth strategy. During her time at YMCA, Florence saw first-hand the positive impact a tailored accommodation and support programme can have on vulnerable and disadvantaged young peoples' lives.
Before joining Action Duchenne, Florence's two previous senior leaderships roles have been at UK wide youth charities; The Specialist Schools and Academies Trust, an international charity supporting teachers to empower students to succeed and The Duke of Edinburgh's International Award Foundation, an international organisation promoting the Duke of Edinburgh's International Award in 130 countries.
Combining her passion for, and experience of youth and education, Florence joined Action Duchenne in February 2020 as its National Director.
Florence is a wife and mother. She lives in North London. She enjoys reading on a broad range of subjects ranging from balancing work with family to modern Chinese history; Jung Chang, Sheryl Sandberg and Allison Pearson are her favourite authors.
Father to Katie, Cormac and Ronan, we found out that Cormac had DMD in 2014 after trying to get to the bottom of his antisocial behaviour. Cormac has a nonsense mutation and this led to working with Action Duchenne and other DMD charities to fight for the approval of Translarna in Scotland. Cormac was the first patient to be prescribed Translarna through the NHS in the UK via an Individual Patient Funding Request, which is how he continues to receive the drug today.
Gary said: "I'm very excited to be ask to work with Shelley, her team and the whole Duchenne community in helping to advise where technology can help to enhance our lives. I am a strong advocate for the use of technology in helping to make patients and carers life easier and hope to use my experience within IT to accelerate this in an increasingly digital world. Please send any ideas you have to me, I'm sure there's lots out there."
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.
I am really excited to join Action Duchenne in the role of Support Officer. I have been part of the Action Duchenne community for several years now, ever since one of our really good friends (Lizzie, also a team member at Action Duchenne) son was diagnosed with the condition. Sebastian is an awesome boy, and I never ceased to be amazed by how he takes the condition in his stride and faces challenges with such a matter-of-fact attitude. This lead my family and I to want to do what we could to raise awareness of Action Duchenne and how they support families, and so much more. In 2017 my husband ran the London Marathon and raised over a thousand pounds, our two sons and I have done bake sales outside our house and last May I hiked the Yorkshire Three Peaks to raise money too.
I am a Therapeutic Person Centred Counsellor and since 2018 I have been running my own private practice alongside my role at a primary school as a family support worker. I am now bringing both of these roles together into the role of Support Officer for Action Duchenne. I hope I can be part of supporting the Duchenne community at whatever stage of the journey they are on and contribute to the amazing work that Action Duchenne do.
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.
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
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.
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.