In this edition of Gauchers News you can find further details of the Associations Conference being held in June, an update on the first Susan Lewis Memorial Award and further exciting fundraising planned for 2010

Dear Friends,
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The Gauchers Association is holding a one-day conference on Sunday 13th June 2010 at the Royal Free Hospital in London,from 10am to 4pm.
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Recently diagnosed Type 1 patient Ian White tells his story; “Hi, my name is Ian White. I am 37 years old and live in Brentwood, Essex. Denise and I got married on 1st August 2009 – it was such a lovely day and one we will never forget for so many reasons – and below is a picture of us on our honeymoon in the Dominican Republic.
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Professor Cox,who inspired the original application for this collaborative project to the Association, reports –
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Dr Atul Mehta and Dr Derralyn Hughes from the Royal Free Hospital,London report on the recent Cerezyme shortage–
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Amicus Therapeutics do not expect to advance Plicera into Phase 3 for Gaucher disease. Daniel Brown, a member of Amicus’ Gaucher Patient Advisory Board, reports on a disappointing conclusion to Amicus’ Phase 2 trial of Plicera –
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Dr Atul Mehta and Dr Derralyn Hughes announce a major study into the possible relationship between Gaucher disease and Parkinson’s disease –
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In the July 2009 edition of Gauchers News, we reported on a grant awarded to Simon Waddington, a senior research fellow in the Department of Haematology at the Royal Free Hospital in London to purchase a batch of viral vectors. These vectors were for use in his gene therapy research in Type II Gaucher disease. Simon provides an update on this work –
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Despite the forecast of a cold and wet weekend, on Friday 13th November, 40 parents, young people with neuronopathic Gaucher disease (nGD) and their siblings headed to Surrey for a activity weekend at the PGL activity centre in Marchants Hill. The weekend had two purposes, the first to bring together a group of young nGD girls to discuss transition and independence and secondly, for the families to get together and have some much-needed fun.  Tanya Collin-Histed, Executive Director of the Gauchers Association and parent to 15 year-old Madeline who has nGD  reports on the weekend –
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Niamh Finnegan and Victoria Crook, Clinical Nurse Specialists at Great Ormond Street Hospital, London, report on the latest ‘Aunty Day’ session for a group of Type III girls –
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Research Psychologist Lauren McPartlan from Great Ormond Street Hospital reports on a study of behaviour in Type III Gaucher paediatric patients –
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In December 2009, the Association launched its internet Type III Family Zone. The zone is a forum for parents, carers and those with Type III GD who are over 18 who can talk to each other online (like a chat room). The zone enables users to post questions, learn about research, connect with families all over the world and feel part of
the Gaucher community.
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Adults who have grown up coping with Inherited Metabolic Disorders (IMDs) can now access a new service at Selly Oak Hospital, part of the University Hospital Birmingham NHS Foundation Trust. This is the first step in developing a  Rare Diseases Group at the Hospital, which will provide highly specialised care to patients and their families facing the challenge of managing these rare conditions, Jane Lodwig, Clinical Nurse Specialist reports–
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Bulgarian doctor Dr. Daniela Avdjieva spends 5 weeks in the UK as the first person to receive the Susan Lewis Memorial Award –
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Laura Manuell, devoted aunt to Louis and sister to Alison (Louis’mum) tells Louis’ story –
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In September 2009, Professor Timothy Cox’s secretary of 20  years, Joan Grantham, retired. To mark the occasion and to express gratitude for all that Joan had achieved for the association over the years, Aberdeen South MP Anne Begg, a Gaucher sufferer, hosted a tea party in her honour at the House of Commons. Colleagues from Cambridge joined association members who had worked with Joan over the years to express their thanks and to pay tribute to her commitment and friendship, Jeremy Manuel, Chairman of the Gauchers Association writes –
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The Association is delighted to announce that we have five people running in the 2010 London Marathon.
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During the weekend of 9th, 10th and 11th July 2010, the Gauchers Association is holding its national online supper quiz.
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We are pleased to announce two sporting events being held in September 2010 to raise much needed funds for the Association.
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The Association relies on its members, their families and their friends who generously support the association’s work through subscriptions, donations and the organisation of fundraising events. We are extremely grateful for this support and would like to remind you that we have various fundraising resources available to help you, such as t-shirts, balloons, stickers, posters and leaflets.
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Shadow Health Secretary Andrew Lansley MP unveiled ‘Portrait of the Artist as High Flyer’ by Hugh Mackinnon on 16th September 2009 at Addenbrooke’s Hospital in Cambridge.
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