We began fundraising in 2007 with a clear goal in mind: to cure Duchenne muscular dystrophy, a devastating muscle-wasting disease that leads to paralysis and early death for all sufferers. The disease is 100% fatal. There is currently no cure.
We identify and fund research into potential treatments and cures, with the aim of improving the condition of all boys living with Duchenne – now and in the future.
We focus on creating powerful collaborations between some of the world’s most brilliant scientists, proactive Duchenne charities, and innovative biotech companies to accelerate the development of therapies that are ripe for treating Duchenne now.
We get involved to make a difference for all boys with Duchenne.
MILLION pounds raised thanks to our dedicated supporters
projects funded to help combat the biggest genetic killer of children
other patient organisations with which we have proudly collaborated
Kerry worked for several years at United Bank of Switzerland, and then as a commercial property consultant and business development consultant part time for several companies while raising her four young children. Her oldest child was diagnosed with Duchenne muscular dystrophy in 2007. Kerry co-founded the Duchenne Research Fund with her husband Doron with the aim of funding research to find a cure for Duchenne. She is now the driving force behind the charity’s activities.
Doron is the Commercial Director at ML Accessories Ltd, a leading UK-based importer and distributor of Lighting & Electrical products. He previously worked in the telecommunications and recruitment industries. He co-founded the Duchenne Research Fund with his wife Kerry following their son’s diagnosis of Duchenne muscular dystrophy, in order to drive research efforts forward in a bid to identify long-term treatments and a cure for DMD.
Chair of the board of trustees
Simon is a first-class transactional lawyer with expertise in all areas of the corporate real estate sector. He has been a partner at Olswang since May 2006, when he merged his own practice with the firm. Simon is actively involved with several charities and is a founder member of Olswang’s Charity Law Group. He is chair of the Duchenne Research Fund’s board of trustees and has been involved with the charity since its inception in 2007.
Jeremy is a partner at Holman Fenwick Willan with expertise in the aerospace sector and dispute resolution. He heads up the firm’s São Paulo office. He has also been involved with several successful charities. Jeremy has been part of the Duchenne Research Fund since its inception in 2007.
Daniel qualified as a chartered accountant at BDO in 1987 and started Cameron Baum in 1994. He is a general practitioner with deep and thorough understanding of both business and tax issues. Daniel keeps a firm hand on the Duchenne Research Fund’s donations and spending, ensuring management accounts, cashflow, budgeting and internal reporting standards are produced and properly followed.
Dr Sarah Shelley
Dr Sarah Shelley MBBS (London) MRCGP DFFP is a GP at the Millway Medical Practice in London. She helps coordinate the research focus and direction of the Duchenne Research Fund. Sarah works closely with Dr Ronald Cohn – head of the charity’s scientific advisory board – to review projects and scientific possibilities for Duchenne muscular dystrophy and the charity’s portfolio.
Our Scientific Advisory Board
Dr Ronald Cohn
Chief Scientific Advisor
Dr Ronald Cohn is the President and CEO of the Hospital for Sick Children in Toronto (known as ‘Sick Kids’), where he has also been Paediatrician-in-Chief, Chief of the Division of Clinical and Metabolic Genetics and Co-Director of the Centre for Genetic Medicine. He is also the Inaugural Women’s Auxiliary Chair in Clinical and Metabolic Genetics and a faculty member of the Department of Molecular Genetics and Paediatrics at the University of Toronto.
He received his medical degree from the University of Essen, Germany. After his postdoctoral fellowship at the Howard Hughes Medical Institute in the laboratory of Dr Kevin Campbell, he moved to Baltimore where he was the first combined resident in paediatrics and genetics at the Johns Hopkins University. He subsequently joined the faculty of the McKusick-Nathans Institute of Genetic Medicine at Johns Hopkins where he became the director of the world’s first multidisciplinary centre for Hypotonia, which has earned national and international recognition. He was also the director of the medical genetics residency programme at Johns Hopkins. In July 2013, the Hospital for Sick Children’s Centre for Genetic Medicine launched the Genome Clinic, focusing on genetics research and discovery.
Dr Cohn has received numerous awards including the David M Kamsler Award for outstanding compassionate and expert care of pediatric patients, 2004, First Annual Harvard-Partners Center for Genetics and Genomics Award in Medical, 2006, and the NIH Young Innovator Award, 2008.
He has been the Chief Scientific Advisor for the Duchenne Research Fund since the charity’s inception and, together with and Dr Kevin Campbell (Professor of Physiology and Biophysics at the University of Iowa), Professor Madeleine Durbeej-Hjalt (Professor and Vice Chair of the Department of Experimental Medical Science at Lund University, Sweden) and Dr James Dowling (Associate Professor, Departments of Paediatrics and Molecular Genetics, University of Toronto), advises the board of trustees on funding decisions. More recently, he has been representing the charity as the Scientific Advisory Board Member of Solid GT, a biotechnology company that was founded to advance gene therapy as a disease-modifying treatment for all Duchenne muscular dystrophy patients.
Professor Madeleine Durbeej-Hjalt
Madeleine Durbeej-Hjalt is Professor and Vice Chair of the Department of Experimental Medical Science at Lund University, Sweden. She received her PhD from Uppsala University and did her postdoctoral studies with Kevin Campbell at Howard Hughes Medical Institute. Since 2001 she has been heading a research group that studies muscular dystrophy.
Dr James Dowling
James Dowling is a staff clinician and senior scientist at the Hospital for Sick Children in Toronto, Canada. He is also an Associate Professor of Paediatrics and Molecular Genetics at University of Toronto. Dr Dowling received his BSc and MSc from Yale University and his MD/PhD from the University of Chicago. His PhD work was performed in the laboratory of Elaine Fuchs. He did his residency in child neurology at Children’s Hospital of Philadelphia and completed postdoctoral research with Jeff Golden (UPenn) and Eva Feldman (University of Michigan). Until 2013, he was an assistant professor at the University of Michigan. Since then he has been at SickKids in Toronto, leading the clinical neuromuscular program and heading an active research laboratory. His clinical expertise is in childhood neuromuscular disorders and he is considered one of the leading authorities on the diagnosis and management of muscular dystrophies and congenital myopathies. His research is centered on understanding pathomechanisms of and developing therapies for childhood muscle diseases. Dr Dowling is deeply devoted to the care and management of patients with DMD. He helped develop the Certified Duchenne Care Center Program, and is currently on its advisory committee. He also serves on the scientific advisory boards of the RYR1 Foundation, Jesse’s Journey, and Muscular Dystrophy Association USA.
Director of operations
Sheli oversees the DRF’s day-to-day activities, managing the portfolio of DRF-funded projects, as well as relationships with researchers, partners and other Duchenne charities. Before joining the DRF she worked in editorial and production across a range of national newspapers and magazines, and has a masters in modern languages. She also does freelance translation, editing and graphic design for print and online.
We aim to stop Duchenne muscular dystrophy being a death sentence for hundreds of thousands of boys worldwide.
We are helping turn the hope of treatments into reality. Critical treatments are in clinical trial thanks to our funds.
In the last 4 years we have given more than £3m to ground-breaking research projects.
And there is still work to do.