Emily Reuben OBE – Co-founder

Emily is the co-founder and CEO of Duchenne UK. She graduated from Oxford University with a degree in modern history, and had a successful career as a reporter and anchor for Channel 4 News and CNN International.

After her eldest son was diagnosed with Duchenne muscular dystrophy (DMD), she established the Duchenne Children’s Trust. The charity joined forces with Joining Jack and is now Duchenne UK. Since 2012 they have spent more than £17 million on accelerating the search for treatments and a cure for DMD, and have set up groundbreaking and award-winning collaborations, turning Duchenne UK into the UK’s largest funder of DMD research.

Emily has advocated on behalf of patients around the world in meetings at the Food and Drug Administration (FDA), European Medicines Agency (EMA), Medicines and Healthcare products Regulatory Agency (MHRA), National Institute for Health and Care Excellence (NICE) and Scottish Medicines Consortium (SMC). She was praised in the House of Commons for the charity’s work by the then Minister for Life Sciences, and in 2017 Emily and her co-founder Alex Johnson were awarded a Points of Light award by the Prime Minister for their passionate work.

Emily is a former member of the Association of the British Pharmaceutical Industry’s (ABPI) eight-person Patient Advisory Council, and sits on the Steering Group for the ABPI’s Patient Organisation Forum. She is also a member of the MHRA’s Patient Group Consultative Forum, as well as the Steering Group for the regulator’s new Innovative Licensing and Access Pathway (ILAP).

She was awarded an OBE (Officer of the Most Excellent Order of the British Empire) for her services to charity and to people with Duchenne muscular dystrophy in His Majesty The King’s Birthday Honours list in 2023.

Alex Johnson OBE – Co-founder 

Alex is the co-founder of Duchenne UK.

Alex founded the charity Joining Jack with her husband, ex-rugby league player Andy Johnson, following their son Jack’s diagnosis with Duchenne muscular dystrophy in 2011. The rugby community came together to help the family and helped them create international awareness for Duchenne with innovative campaigns like #Link4DMD. Alex has subsequently joined the board of United Parent Project (UPPMD) and has helped organise international awareness events like World Duchenne Awareness Day. She has represented the Duchenne community by speaking at international conferences around the world, workshops and meetings with the FDA, EMA, MHRA, NICE and at the Houses of Parliament. Alex was honoured to join the steering committee that helped organise a workshop with the EMA on exon skipping. Following the meeting the steering committee published an article in the Lancet. Alex completed training at a Eurordis summer school to become a trained patient advocate and is also a member of the MHRA patient group consultative forum.

She was awarded an OBE (Officer of the Most Excellent Order of the British Empire) for her services to charity and to people with Duchenne muscular dystrophy in His Majesty The King’s Birthday Honours list in 2023.

Jo Howie – Managing Director

Jo Howie is Duchenne UK’s Managing Director.  She started her career at sports marketing agency, Pitch Marketing Group, going on to work in the Commercial and Major Events team at British Tennis.

She joined the Duchenne UK in September 2019 having spent the previous six years leading the Fundraising and Marketing team at Lawrence Dallaglio’s charity, Dallaglio RugbyWorks.

Alessandra Gaeta – Director of Research & Development

Alessandra joined the team in July 2021 with nearly 20 years of Research & Development experience in academia, industry & the public sector, where she held scientific, managerial and leadership roles.

Following a Pharmacy degree and a PhD in Medicinal Chemistry, she was awarded a 2-year post-doctoral Maplethorpe Fellowship for the promotion of pharmaceutical education and excellence in research at the Department of Pharmacy, King’s College London.

Throughout her career, Alessandra has particularly focussed on translational research and the value on cross-sector collaboration.

In previous roles in government funded organisations, Alessandra led on the creation of high-profile, national R&D programmes to accelerate innovative treatments to the clinic. At the Medicines Discovery Catapult, she established a portfolio of patient focused medicines discovery programmes in areas of unmet medical need, in partnership with charities and industry. Prior to that, at the NIHR, she was instrumental in the creation of the Translational Research Collaboration pilot programme for early phase clinical research, which has since been implemented in eight therapeutic areas. Under her leadership, over a period of 4 years, the programme attracted over £20 million industry funding to support a portfolio of early phase clinical collaborations in UK academia and in the NHS.

Emma Heslop – DMD Hub Manager

Emma Heslop is the DMD Hub manager based at The John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Duchenne UK.

Emma trained as a biological anthropologist at Durham University and was awarded an MSc (Research) in 2005. She has been part of the muscle team at the John Walton Muscular Dystropy Research Centre at Newcastle University since October 2006 when she joined the TREAT-NMD neuromuscular network of excellence as assistant project manager.

Within TREAT-NMD, Emma was responsible for leading the work relating to ‘Network in Action’ for DMD and SMA and enhancing international collaborations. From 2009 to 2013 she helped form and coordinated the TREAT-NMD Advisory Committee for Therapeutics (TACT) and was subsequently the nominated first point of contact for industry enquiries to the network.

Before taking on the role as DMD Hub Manager, Emma was the RD-Connect Project Manager at Newcastle University in 2013 with responsibility for leading the strategic development and delivery of the project to ensure the objectives were achieved.

Dala Jenkin – Personal Assistant to Founders and Directors of Research

Dala Jenkin is Personal Assistant to the Founders and Director of Research at Duchenne UK. Dala joined the team in May 2018 having previously worked as a lifestyle manager at Quintessentially, fashion buying assistant at Matches and Austin Reed Group and has also spent time working with children with autism. Dala has a First Class BA (Hons) in Marketing and Fashion from the University of Hertfordshire.

Will Pender – Senior Policy Manager

Will is the Senior Policy Manager at Duchenne UK, responsible for developing policy positions and building the charity’s external profile. He also supported the CEO and Director of Research on campaign strategies and access to treatments among key stakeholders.

Will joined Duchenne UK in May 2020, and has previously worked in Parliament, for a public affairs consultancy, for a charity and in a global pharmaceutical company.

 

Hayley Philippault – Head of Technology

Hayley is the Technology Projects Manager at Duchenne UK and currently leads on the SMART Suit and Dream Wheelchair projects. She trained as a product designer and holds a BSc (hons) degree in Engineering Product Design and MSc in Enterprise.  She has lectured on Design Research for Disability and Entrepreneurship degree courses and is the current chair of the British Healthcare Trades Association’s children’s equipment section.

Hayley joined Duchenne UK in Sept 2022, having spent the previous 8 years managing the children’s equipment charity MERU, as part of Queen Elizabeth’s Foundation for Disabled People, where she led the first scheme to introduce powered mobility to children under 5 in Northern Ireland.  Hayley has designed and produced numerous assistive products currently on the market and is committed to using design to overcome barriers and improve lives.

Maria Sahin – Finance Manager

Maria Sahin joined Duchenne UK as our Finance Officer in January 2022. She has since became our Finance Manager in January 2023, and is responsible for day to day bookkeeping, managing accounts, financial control, auditing, and serves as our HR. She has previously worked at a London charity that focuses on elevating poverty and inequality.”

Cathy Turner – DMD Care UK Manager

Cathy Turner is the DMD Care UK Manager based at The John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Duchenne UK.

Previously, Cathy was the coordinator of the TREAT-NMD Advisory Committee for Therapeutics (TACT) and remains closely involved. This is a unique multi-disciplinary and international group of leading academic and industry drug development experts as well as representatives from patient foundations and regulatory experts. A TACT review provides detailed guidance on the translation and development path of therapeutics programs in rare neuromuscular diseases, many of which have been for DMD.

She works closely with colleagues (in Newcastle and beyond) involved in all aspects of DMD diagnosis, care and research – from physiotherapists, clinical consultants and trial coordinators to lab-based research staff, patient organisations and members of international networks such as TREAT-NMD.

Sejal Thakrar – Advocacy Support Officer

Sejal Thakrar is one of Duchenne UK’s Advocacy Support Officers – this is a voluntary role.

Sejal’s son Shiv was diagnosed with Duchenne in April 2014. Following diagnosis, Sejal gave up her career as a Customer Intelligence Data Analyst within the Telecommunications sector.

In January 2015, along with her husband Manoj, they set up ‘Smile with Shiv’ to work closely with the Duchenne community, in raising awareness and funds for Duchenne charities, as well as advocacy work.

Sejal has used her experience as a Data Analyst to assist in the analysis of surveys, carried out as part of our community engagement work, to better understand what patients and caregivers want from care, research and clinical trials.

Lisa Kuhwald – Advocacy Support Officer

Lisa Kuhwald is Duchenne UK’s Advocacy Support Officer – this is a voluntary role.

Lisa is mum to 4 boys, Oscar, Casper, Felix and Herbie (Felix and his twin Herbie pictured). They live in Altrincham near Manchester.

She studied Chemistry at the University of Hull and worked as a teacher and in the pharmaceutical industry. Lisa now runs the family property business in Manchester, founded by her husband Karl.

They set up Team Felix in 2013, after their son Felix, then 2, was diagnosed with Duchenne. The goal is to raise as much money as possible, and as quickly as possible, to fund research into treatments to end Duchenne.

Owen Farrell is an English professional rugby union player, currently captain of RFU Championship side Saracens and is captain of the England National Team. He has been part of helping promote awareness of DMD since the start of Jack Johnson’s diagnosis. 

“My dad and Jack’s dad played together at Wigan and our families are very close,” says Owen. “The charity has been a huge part of our family’s lives. Everyone who donates or who tells their friends and they then go on to spread awareness or raise money, then they are helping. If I can help spread awareness by doing the salute when I kick a goal to do this, it’s the least I can do.”

Jonathan Whitworth, Managing Director of DSales (UK) Ltd, is a passionate supporter of Joining Jack and Duchenne UK, having made the cause his company’s corporate charity and has personally taken part in a number of Joining Jack events.

“Having become aware of Joining Jack after meeting Andy at a charity fundraiser, I could not imagine a more worthy cause for our company to support. Jack’s plight and that of other boys with this crippling condition, could not fail to move the hardest of hearts. As a family man myself with young children, two of whom are type one diabetic, I can fully sympathise with Jack’s parents and their efforts to find a cure. I have got to know Andy and Alex very well over the last few years and don’t know anyone who works as hard for a cause as they do. I hope as many people as possible can help raise awareness and help end the terrible suffering that DMD causes.”

Andy Farrell is the former Wigan and Great Britain captain, England rugby union coach and current assistant Ireland coach. “I feel honoured to be an Ambassador for Duchenne UK; a charity set up to help raise much-needed awareness of the fatal disease Duchenne muscular dystrophy”.

“When Andy Johnson (of Joining Jack) asked me to help the first thing that came to mind was my own two sons, as this mainly affects boys, and if anything was ever to happen to them I would hope and pray that I would also get support from friends. AJ has been a great friend since we started to play rugby together and to help him with this charity is a great privilege.”

Kris Radlinski is a former Wigan and Great Britain rugby league star and current Rugby General Manager.

“Some people wander through life searching for answers as to where they fit into it and what’s it all about. Andy and Alex’s life has been simplified in some ways, as their path has been made very clear. They need to make Jack’s and James’s life happy and create memories. It’s our job to ensure they have the opportunity to do this by helping them in whatever way we can. So I urge you to join me in working with Duchenne UK.”

Peter Serafinowicz is an actor, comedian, writer, composer, voice artist, and director. He has appeared in film (Phantom Menace), on television (Spaced, Peter Serafinowicz Show) and on the radio since the early 90’s. His first book, A Billion Jokes (Volume One) was published in 2012.

Sarah Alexander is an actress, known for her roles in British comedy series such as Armstrong and Miller, Smack the Pony, Coupling, The Worst Week of My Life, Jonathan Creek, Me & Mrs Jones and Green Wing.

Sara Parker Bowles is a fashion writer. She previously worked at Vogue and is now Associate Editor at Harper’s Bazaar.

Having worked at Goldman Sachs and UBS Ben Levine then co-founded LMR Partners in 2009, a London based boutique asset management business. Ben graduated from Cambridge in Economics in 1996 and went on complete his MSc in Econometrics and Mathematical Economics at the LSE.

He lives in London with his wife Miranda and three young children.

Mary Nightingale is one of the main anchors of the ITN Evening news. Her career began in business journalism and she has also presented Wish You Were Here and many other popular programmes.

Alex Bilmes is the Editor of British Esquire.

Formerly Features Director of British GQ and Contributing Editor to British Vogue, Bilmes is an award-winning journalist and has written for numerous magazines and newspapers including The Spectator, The Observer, The Times, The Sunday Times and The Daily Telegraph.

Clare Runacres’ voice is known to millions of BBC Radio 2 and BBC 6 Music listeners, where she reads the news.  She is a journalist who has worked in broadcasting for more than 20 years covering stories from the Iraq war to the London Olympics, and has even read the Shipping Forecast on Radio 4. She provides voluntary support for the Duchenne UK communications team. Clare has been a committed member of the Duchenne Dash support staff for many years. In 2017 she took part in the ride and wrote a blog about her experiences.

Peter Williams is the Founder & CEO of UK clothing brand Jack Wills, a global brand trading from c.100 company owned stores in Europe, North America and Asia, with franchises across the Middle East. Peter is also a major support of Malaria No More UK.

Laura Williams is a jewellery designer.