Sharmila is the founder of Cure EB (Formerly Sohana Research Fund) and Sohana’s mother. She graduated from Cambridge University with a degree in veterinary medicine in 1994 and worked in general practice gaining a certificate in veterinary radiology. She stopped work soon after Sohana was born. Optimism within the research community coupled with chronic underfunding of EB medical research led to the idea for a dedicated research fund. She is the driving force behind the fund, planning and implementing events, thinking up ridiculous social media challenges, video posts, meeting researchers, speaking at events and writing (all sorts). With the growth of the fund and handing over of administrative tasks she plans to concentrate on maximising research progress by building collaborations between researchers, other research funding bodies and relationships with biotech to realise the ultimate aim of the fund –to #cureEB. She has three other daughters and now a dog.
“Watching Sohana suffer the agonising pain of EB everyday is the best incentive to push forward research to find a treatment for for all”
James studied at Cambridge before moving to London to take up practice as a commercial Barrister at Essex Court Chambers. He has been Queens Council since 2012. James is father to Sohana and her 3 sisters. He was co-founder of Cure EB (Formerly Sohana Research Fund); has been a trustee since inception; and is Sharmila’s First Lieutenant.
He has primary responsibility for financial management, legal and compliance.
“Faith in progress is not enough. But coupled with funding and research, it is a powerful force for improving the lives of the people who suffer from this terrible condition”
Michael De Lathauwer
Michaël is Co-CEO of the Cardano Group. Before joining Cardano, Michaël spent 23 years at Goldman Sachs (GS) with postings in London, New York, Hong Kong and Singapore, becoming a partner in 2002. In the last 6 years of his time at GS he was responsible for the Pension and Insurance Solutions Group, working with institutions across Europe and globally. He graduated from the University of Louvain (Belgium) with a Masters in Economics and the City University Business School with a Masters in Business Administration. His association with Cure EB (Formerly Sohana Research Fund) began in 2011.
“Thrilled to help find a solution to this cruelest of conditions through fundamental
Professor David Kelsell
After graduating from Sheffield University, I joined the Imperial Cancer Research Fund as a Scientific Officer where I completed a PhD on the “Genetics of familial breast cancer”. My PhD involved genetic studies to identify the two breast cancer genes, BRCA1 and BRCA2 and their importance in familial and sporadic breast cancer. This study resulted in a number of manuscripts including first author papers in the Lancet and Human Molecular Genetics. In addition, I was author on a number of breast cancer consortium papers including the landmark paper describing the cloning of the BRCA2 gene in Nature. In addition to my studies in breast cancer genetics, I formed a longstanding collaboration with Professor Irene Leigh at the Royal London Hospital, performing genetic studies on familial palmoplantar keratodermas, particularly the localization of a predisposition gene to both skin disease and oesophageal cancer. After a short but successful Wellcome Trust postdoctoral in which time we identified Connexin 26 as the main genetic cause of hearing loss, I joined SmithKline Beecham (now GlaxoSmithkline) where I used a bioinformatic approach to identify new molecular targets. From there I returned to academia and the Centre for Cutaneous Research as a Senior Lecturer to build an independent research team working on human skin genetics and keratinocyte biology. I was made Professor of Human Molecular Genetics in September 2003. I am Deputy Director of Research at the Blizard Institute and board member of the European Society of Dermatological Research. I have been a trustee of the Sohana Research Fund since registration.
“As an academic researcher working on other genetic skin and related disorders I am really impressed with the vision, enthusiasm and focus into translating therapies to this specific condition. I am delighted to help support Cure EB (Formerly Sohana Research Fund) in this important mission”
Tazim was educated at St John’s College, Cambridge and qualified as a solicitor in 1996 at the City law firm Freshfields. She was a partner of the firm within its banking department from 2008 until 2012. Tazim had a broad practice encompassing all aspects of banking work with an emphasis on acquisition finance (advising private equity sponsors, investment and commercial banks) and also advised corporate borrowers. Since 2012 Tazim has been working part-time as a consultant at Freshfields and has been spending more time at home with her three children (aged 11, 9 and 4).
“It is an honour to help this charity fund ground-breaking research in the hope that one day soon, EB will be eliminated from our vocabulary and from the lives of some of the world’s bravest children”
Duncan Wales is Group CEO of Exotix Capital, the developing markets investment bank. Duncan is an experienced leader of and adviser to UK-listed multinationals, and was part of the executive management team at ICAP anddot.com innovator BrokerTec, and the global equities team at ING Barings. Before joining Exotix Capital, he held a senior role with Standard Chartered’s corporate and institutional banking management team. Duncan is a lawyer by background and trained and worked at Clifford Chance for five years. He was a member of the EU Commission’s Working Group on Derivatives, the FOA MiFID Practitioners Panel and the UK Associate Parliamentary Group on Wholesale Financial Markets & Services. Duncan spent 12 years in UK reserve forces, in a variety of roles, and was deployed on operations in Bosnia and Afghanistan amongst others. He supports a number of medical research and military charities.
Cure EB Operations
Cure EB Administrator
Cure EB Advisory Board
All senior positions are trustees and volunteers, with paid admin and fundraising support staff.