May 2008 - NEWSLETTER

Dear Friends Once again I joined our team last month to run the Bath Half Marathon which was great fun and sponsorship is still coming in. The various continued efforts from staff and pupils at the RoyalHigh School are much appreciated and there are different events planned over the coming months. Bernice Mings, an old friend of Sophie’s, is competing in the London Triathlon in aid of the Trust – do support her if you can with an on-line donation at Justgiving - Bernice's page-The Sophie Cameron Trust.

However, instead of concentrating on fundraising events, this newsletter is about the many good things that have come about as a result of efforts for the Sophie Cameron Trust. Many of these are in the area of research and Richard Steele (committee member and trustee) has put together a resumé of our endeavours which is attached herewith. I know that Sophie’s parents are particularly pleased about the book being published by Oxford University Press; they only wish there had been more information about Encephalitis Lethargica when Sophie had first fallen ill. Up to date information about the book and all other initiatives can be viewed on our website:

This extensive website is easily available worldwide and being the only global point of information about the illness EL, is visited by people from many countries. Caroline Passlow, from Australia, discovered the site last year when her husband Adam was diagnosed with EL soon after their wedding. After making contact with us, she was able to get in touch with Gavin Giovanonni’s team in London, one of whom is currently working in Australia. A couple of months later, Caroline informed us that Adam had responded very well to new treatment, was out of intensive care and, albeit slowly, was on the mend. She was pleased to have been able to talk to Sophie’s mother about her husband’s frightening illness and very grateful to have contact with doctors experienced in dealing with EL. Caroline and Adam have a young daughter and in time, hopefully their lives will return to normal.

We have since been approached by another family with a young son who is ill and we have been able to put them in contact with specialist advisors. It is for families such as these that the Sophie Cameron Trust has become so important and we are grateful to you all for your continued support.

With kindest regards

Bernard Whiteside Chair

THE SOPHIE CAMERON TRUST’S RESEARCH PROGRAMME

The Sophie Cameron Trust aims to promote research into the causes and treatment of EL and to promote awareness of EL in the medical profession, as well as the general public. We also encourage international collaboration. Some of the research we have funded is described below. For details, visit

Research on the causes of EL

In 2003, we funded a 3-year study at the Institute of Neurology, University College London to identify brain proteins targeted by auto-antibodies found in the blood of some EL patients. Work on EL at the Institute was described in “Encephalitis lethargica syndrome: 20 new cases and evidence of basal ganglia autoimmunity”(Brain 127, no. 1, p.21-33, 2004). Further joint research on these brain proteins at The Institute of Neurology and The Institute of Cell and Molecular Science, QueenMaryUniversity, London (QMUL) has been agreed. From 2008, we are funding a 3-year Sophie Cameron Trust Ph.D Studentship at QMUL to study the role of anti-basal ganglia antibodies in EL and related diseases. We are also supporting immunochemical research at LondonMetropolitanUniversity to look for viruses in the brains of EL patients.

Physiotherapy

In 2003, we, together with the Medlock Trust and the Brownsword Charitable Foundation, initiated funding of a 3-year programme to evaluate the benefits of intensive physiotherapy for patients with severe brain injury.

Research in the United States

In 2005, we funded work at Indiana University School of Medicine to develop a database of encephalitis lethargica signs and symptoms for statistical analysis. Grants for this and other EL-related research will continue during 2007-2008. We are are also supporting a visit to London in 2008 by Professor Vilensky, who will give a seminar on the 1920’s epidemic of EL and a contemporary evaluation of the disease. Recent papers by Prof. Vilensky include “Movement disorders associated with encephalitis lethargica: A video compilation” (Movement Disorders, 2006 Jan; 21(1):1-8); “Children and encephalitis lethargica. A historical review” (Pediatric Neurology 2007 37(2) 79-84); and “The relationship between encephalitis lethargica and influenza: a critical analysis" (Journal of NeuroVirology 2008, in press). A textbook on EL, edited by Prof. Vilensky and to be published by Oxford University Press, has been agreed, and the Trust is providing funds for an editorial assistant to coordinate preparation of the book.

Research in Russia

In 2006, we approved a grant to Dr. Mukhamedzyanov of KazanStateMedicalUniversity to review Russian-language articles on EL, most of which have never been available in English. EL in the Soviet Union had some unusual characteristics, notably persistence in epidemic form into the 1950s. This work will be published under the title “Encephalitis Lethargica in the Soviet Union” (European Neurology, in press).

National surveillance programme for EL

A national surveillance programme to monitor EL in the UK has started. The Trust is supporting this project by funding part of the salary of the research manager who runs it. The programme is led by Professor Giovannoni (Institute of Cell and Molecular Science, Queen Mary University London), and the principal investigators will be Dr Anette Schrag (consultant neurologist at the RoyalFreeHospital) and Dr Cheryl Hemmingway (paediatric consultant neurologist at GreatOrmondStreetHospital).