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.
Duchenne UK was founded by Emily Reuben and Alex Johnson, two mothers of boys with Duchenne muscular dystrophy. The charity has grown quickly since its founding and is now supported by a small team of operations, fundraising and communications staff and volunteers.
Emily Reuben – 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 FDA, EMA, MHRA, NICE and 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 member of the ABPI’s 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).
Alex Johnson – 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
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
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.
Amy Littleton – Director of Fundraising
Amy Littleton is Duchenne UK’s Director of Fundraising. She brings a wealth of experience working within the charity sector developing and leading on fundraising initiatives. Amy manages our partnerships with key supporters including corporate partners and Trusts and Foundations and leads our fundraising strategy.
She joined Duchenne UK in September 2020 having previously lead the Fundraising and Marketing team at Dallaglio RugbyWorks.
Ben Monro-Davies – Director of Communications
Ben Monro-Davies is the Director of Communications for Duchenne UK, responsible for engaging our supporters and stakeholders, and promoting the charity’s work more widely.
Previously he was a journalist for nearly thirty years, working at Sky News, Channel 4 News and the BBC. He is also a trustee of the charity Prostate Cancer Research.
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.
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.
Sarah Johnson – Programme Communications Manager
Sarah joined the Duchenne UK team in January 2021. As Programme Communications Manager, she is responsible for engaging our audiences with Duchenne UK’s flagship programmes and research.
Sarah has previously worked in communications, marketing and fundraising roles in children’s and education charities. She has a BA in English Literature from the University of York and a CIM Professional Certificate in Marketing.
Alexis Gebbie – Fundraising Manager
Alexis is Fundraising Manager at Duchenne UK having previously worked in fundraising for different neurological and NHS based charities. She has a BA in English Literature and Linguistics from the University of York. As Fundraising Manager, Alexis works closely with our supporters and Family and Friends Funds to grow our fundraising and enable our mission.
Candi Altman – Fundraising Assistant
Candi joined the Duchenne UK team in July 2022 as our Fundraising Assistant. She has a BA in Childhood Studies and has experience teaching English as a foreign language and working with children in summer camps, working as a care worker for adolescent children, as an administrator for Aspire, a psychosis charity, and as part of the Bereavement Support Team for First Direct Bank. Candi supports our fundraisers, donors, and the DMD community and helps our fundraising function and office to run smoothly.
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.
Cathy Turner – DMD Programme and TACT Coordinator
Cathy Turner is the DMD Programme & TACT Coordinator, based at The John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Duchenne UK.
Cathy coordinates the TREAT-NMD Advisory Committee for Therapeutics (TACT). 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. She is currently Project Manager of the DMD Care UK programme.
Sejal Thakrar – Advocacy Support Officer
Sejal Thakrar is one of Duchenne UK’s Advocacy Support Officers – this is a voluntary role.
Sejal has a son, Shiv, with Duchenne and they live in North West London. Shiv was diagnosed 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.
Our trustees govern Duchenne UK and oversee how the charity is managed and run.
Krishnan Guru-Murthy is the Chair of the Duchenne UK board. He is one of the main anchors of Channel 4 News.
His TV career began at 18 – and he has presented, reported and produced a number of programmes from Newsround to Newsnight.
In 2013, Krishnan arranged for a small group of friends to cycle from London to Paris on the first ever Duchenne Dash. It has grown to become Duchenne UK’s biggest and most challenging event of the year!
Andrew Nebel is the Chairman of our Board. Andrew spent 12 years as UK Director of Marketing and Communications at Barnados, where he lifted their regular annual fundraising from c.£50million in 1997 to over £78 million in 2007/8.
He has previously held a Non-Executive Director position at Moorfields Eye Hospital, among many other posts.
Andrew was awarded an MBE in 2019 for his services to charitable fundraising.
Maria is currently Head of Commercial Innovation for Guy’s and St Thomas’. She focuses on maximising the opportunity to diversify and generate revenue streams to the Trust for the continued development of patient care. She is also looking to optimise patient health outcomes and quality of life, as well as investigating sustainably innovating new products and services.
She was previously Deputy Director of Research at Moorfields Biomedical and Clinical Research Centre, has worked in commercial roles for several blue chip life science companies and also ran a small company commercialising intellectual property for healthcare innovations.
Emily & Nick set up the Duchenne Children’s Trust in 2012, after their son Eli was diagnosed with Duchenne. Nick is a partner in restaurant, film and property businesses.
Cecilia is founder and CEO of the social enterprise company, From Babies With Love. Previously she trained as an accountant with KPMG and was Financial Director of the Gaia Foundation.
Caroline Hazell is Marketing Director at advertising agency John Ayling & Associates. Caroline has worked with global brands such as BMW, Guinness and Standard Life on international events such as the London 2012 Olympics, 6 Nations rugby and the Ryder Cup. She is one of the founding trustees of the charity and has been an avid volunteer since its launch in October 2012.
Chris enjoyed over 30 years in the advertising business, having started working life as a Unilever marketing trainee. Seven years at Saatchi & Saatchi during the 1980’s and then 18 years at Bartle Bogle Hegarty, the leading creative agency of the 1990’s and 2000’s. In that time Chris worked stints in New York and was CEO of BBH Asia Pacific based in Singapore, establishing new office in Tokyo and Shanghai.
More recently Chris set up and established the London offices of Cheil, the leading Korean advertising agency, and then was Chairman and CEO of executive search consultants Grace Blue in Europe.
Pete Williams joined the Duchenne UK board in 2022. He is founder and CEO of British clothing brand Aubin and co-founded Jack Wills.
Our patrons are prominent figures who help to raise awareness and support for Duchenne UK.
As President, HRH former Duchess of Cornwall, works to support children and young adults with life-limiting conditions.
The Queen Consort supports the charity’s efforts to research treatments and find a cure for Duchenne muscular dystrophy, a devastating disease for which there is currently no cure.
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.
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