About Us, Current Activities, Scientific Strategy and Research Evaluation Procedure, Scientific Advisory Board, Charity Manager



About Us

The Myrovlytis Trust was founded in 2007 and is registered in the UK with the Charity Commission (number 1122073).

Recent articles introducing the Trust include one in the Genetic Interest Group's newsletter (here), and one in the European Union's Rare Diseases Task Force newsletter OrphaNews Europe (here).

The Trust has two aims:

1. To advance and promote research into medical and molecular genetics in order to better understand, diagnose, prevent, cure and relieve conditions caused by genetic disorders and/or diseases including but not limited to Birt-Hogg-Dubé syndrome and the free dissemination of the results of such research to the public; and

2. To advance education of the public in medical and molecular genetics.

Currently, the Trust focuses on Birt-Hogg-Dube syndrome, although we are also considering supporting new and existing initiatives that would benefit rare genetic disorders as a whole. Activities, as described on the homepage, include:

1. The Inaugural BHD Symposium was held on 3rd September in Roskilde, Denmark. The Trust organised this in partnership with the BHD Family Alliance and largely funded it. There were about fifty participants at the Symposium, including all the main researchers whose work underpins what we currently know about BHD.

2. Funding scientific research to increase our understanding of the molecular mechanisms underlying BHD syndrome. So far the Trust has awarded grants worth >£1.5m. The Trust does not fund 'overhead' on basic research grants. For information about some of our current grants, see News and Events; for details of the Trust's scientific strategy and Scientific Advisory Board, see below.

3. Supporting the European BHD Consortium - a network of clinicians and other researchers working on BHD syndrome. The Consortium currently has eleven members from seven countries. Its first meeting was held in Amsterdam in February 2008, its second in Roskilde, Denmark, in September 2008, and its next meeting is due to be held in Paris December 2008.

4. Creating a website - BHDSyndrome.org - with the BHD Family Alliance. This websited is intended to be the first point of reference for anyone interested in BHD syndrome - families, researchers etc.

5. The first Myrovlytis Trust Scientific Thought-Leader Workshop was held at the Royal Institution, London, in August. This small closed meeting of leading gene therapists and kidney specialists from around the world, aimed to identify current barriers to progress in the field of renal gene therapy and how to overcome them.

6. Awarding travel grants to enable scientists to attend a conference or to spend time collaborating in another laboratory (see Travel Grants for details). We supported several attendees of the Inaugural BHD Symposium.

The Trust's Scientific Strategy is available here. The Trust's Research Evaluation Procedure is available here.

Professor Terry Cook FRCPath FMedSci, Professor of Renal Pathology at Imperial College London, UK, and Consultant Renal Pathologist to the West London Renal and Transplant Centre, London, UK. Professor Cook advises several organisations, including the Wellcome Trust, the International Society of Nephrology and the Renal Association.

Professor Dian Donnai CBE, Professor of Medical Genetics at the University of Manchester, UK, Clinical Head of Division of St Mary's Hospital and Consultant in the North West Regional Genetics Service. Professor Donnai’s work focuses on childhood syndromes involving structural malformations and learning disability. Professor Donnai has been Consultant Adviser in Genetics to the Chief Medical Officer for England, has served on the UK Government Genetics and Insurance Committee, and is President Elect of the European Society for Human Genetics.

Professor Andrew Hopkins D.Phil. FRCS, Professor of Medicinal Informatics, and holder of the Scottish Universities Life Science Alliance Chair for Translational Biology, Dundee Univerisity, UK. Professor Hopkins' work focuses on drug discovery, having spent several years at Pfizer, and currently consults or advises for several organisations, including the World Health Organisation, the OECD and St Jude's Research Hospital, Memphis, Tennessee.

Professor Eamonn Maher MD FRCP FMedSci, Professor of Medical Genetics at Birmingham University, UK. Professor Maher work focuses on human genetic disorders. Current research interests include inherited and non-inherited kidney cancers, including VHL and BHD syndrome.

Dr Laura Schmidt, staff scientist at the National Cancer Institute-Frederick, NIH, USA. Dr Schmidt's research focuses on identifiying new genes involved in familial renal cancer. Dr Schmidt was part of the teams that cloned the VHL tumor suppressor gene, and that identified mutations in folliculin, the gene mutated in BHD syndrome.

Dr Maurice van Steensel MD PhD, dermatologist at Maastricht University Center for Molecular Dermatology, University Hospital Maastricht, The Netherlands. Dr van Steensel works on congenital dermatological disorders. He has described several novel mutations in folliculin.