Emily Crossley Expand Emily is the co-founder and joint CEO of Duchenne UK. Emily set up the Duchenne Children’s Trust in 2012 after her son was diagnosed with Duchenne. Before that she was a reporter and anchor for Channel 4 News and CNN International. The Duchenne Children's Trust raised £3.5million in its first three years, to spend on clinical trials, research, and clinical trial infrastructure. The charity set up the annual Duchenne Dash, which brings in money for research and raises awareness around Duchenne muscular dystrophy. Emily has advocated on behalf of patients around the world. She's spoken many times in the Houses of Parliament. She is a member of the MHRA patient group consultative forum.
Alex Johnson Expand Alex is the co-founder and joint CEO 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. The charity has successfully raised more than £2 million to spend on translational research and clinical trials. 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
Dr David Bull Expand Dr David Bull is Director of Research for Duchenne UK. David spent 16 years as a research scientist at GlaxoSmithKline. His initial training was in neuroscience, studying novel treatments for Parkinson’s Disease and Schizophrenia, David then led the research team looking into the molecular biology of 5-HT receptors in terms of treating migraine. David then moved into science development in the UK and USA and led the UK Learning & Development team, subsequently becoming VP Leadership & Organisation Development for GSK International.
Jo Howie Expand Jo Howie is Duchenne UK’s Fundraising, Marketing and Operations 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.
Lisa Kuhwald Lisa Kuhwald Expand 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.
Fiona Lawrence Fiona Lawrence Expand Fiona is Director of Clinical Research for Duchenne UK. Fiona previously worked for 5 years for Prosensa, a Dutch company that was developing exon skipping therapies for Duchenne Muscular Dystrophy. Whilst at Prosensa Fiona led the clinical project team that was focused on skipping exon 44. In addition she has many years’ experience organizing clinical research in other therapeutic areas for Pharma/Biotech companies and not for profit/public sector organisations. Fiona has been a member of the DUK Scientific Advisory Board for 2 years and is also currently head of clinical and regulatory affairs for a small pharma company focused on developing treatments for diabetes. Fiona was instrumental in helping to bring the Tamoxifen trial to the UK and assist the Swiss team with regulatory advice.
Sejal Thakrar Expand 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.
Cathy Turner - DMD Programme & TACT Coordinator Expand 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 Duchenne. She works closely with colleagues (in Newcastle and beyond) involved in all aspects of Duchenne 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. This means that Cathy can act as a link between Duchenne related activities involving these stakeholders and help to join-up efforts and initiatives which relate to Duchenne muscular dystrophy.
Emma Heslop - DMD Hub Manager Expand 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.
William Pender Expand 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 Expand Dala Jenkin is the Fundraising Manager 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 autistic children. Dala has a First Class BA (Hons) in Marketing and Fashion from the University of Hertfordshire
Elinor George Expand Elinor is the Research and Project Co-ordinator at Duchenne UK. She joined the team in April 2019 and has worked in several charities over the last 4 years, including Community Housing Cymru in Wales and The Mountain Trust in Nepal. Elinor has a BA in English Literature from the University of Cambridge and a MA in International Development from the University of East Anglia.
Amber Beach Expand Amber Beach is the Fundraising Assistant at Duchenne UK. Amber joined the team in January 2021 having previously worked for Sussex Students’ Union and a local Hospice charity. Amber has a First-Class BA in English and History from the University of Southampton and MA Distinction in Art History from the University of Sussex.
Sarah Johnson Expand Sarah joined Duchenne UK as Communications Manager in January 2021. She began her career in marketing at a small consultancy business and has since worked in varied communications, fundraising and marketing roles in children’s and youth charities. Sarah has a BA in English Literature and a CIM Professional Certificate in Marketing.
Amy Littleton Expand Amy Littleton is Duchenne UK’s Head of Fundraising and Marketing. She brings a wealth of experience working within the charity sector developing and leading on fundraising initiatives. She joined Duchenne UK in September 2020 having previously lead the Fundraising and Marketing team at Dallaglio RugbyWorks.