Jeans for Genes is a national charity which raises money to fund care and support for children and their families affected by genetic disorders. It also funds research into the causes and cures of these disorders.The Myotubular Trust was one of eighteen charities benefitting from proceeds of Jeans for Genes Day, which usually takes place on the first Friday of October each year. The Day invites everyone to go to school or work in their jeans in return for a donation. The Myotubular Trust was specifically chosen as the most deserving charity for the award, and had to undergo a selection process culminating in a presentation to the Jeans for Genes Chief Executive Officer and Board of Trustees.

You may wish to ask your school or organisation to join in with Jeans for Genes day this year. Here is a short advertisement, which includes a contribution from Anne Lennox and her children, trustee of Myotubular Trust to support the Jeans for Genes event.

The New Patient Registry

The Patient Registry will be a database of very basic patient information which will allow, when the time comes, efficient, fast tracked, local clinical trials of new treatments in Europe. The new registry, the first of it's kind for the congenital myopathies, will take the form of an electronic database that will:

• Encourage the development of more research.
• Provide neuromuscular researchers with specific patient information to assist their research.
• Help with new clinical trials in Europe.
• Enhance clinicians' and other health professionals' ability to efficiently deliver treatments for this disease.

Dr Heinz Jungbluth, Senior Lecturer and Consultant Paediatric Neurologist in charge of the Neuromuscular Service at the Evelina Children’s Hospital, Guy's and St Thomas' NHS Foundation Trust, London is the co-ordinator of the new registry and has been liaising with other leading global academics in this field to agree the type of questions that are important for us to include on the registry and will assist with their research. The Myotubular Trust will be announcing later this year, more information about the launch date of the registry so that you can join.

The registry is currently being set up by the Myotubular Trust working in partnership with TREAT-NMD (Translational Research in Europe - Assessment and Treatment of Neuromuscular Diseases), a European neuromuscular network addressing the fragmentation currently hindering translational research for cutting edge therapies in rare neuromuscular diseases (NMD).