Dan Brown (Chairman) - Dan was diagnosed with Type 1 Gaucher disease in September 2003. He joined the Executive Committee to meet other people affected by Gauchers but also to learn more about the various issues facing Gaucher patients in a different position to him and to try to give something back on the basis that he felt and continue to feel a deep sense of gratitude for the efforts that have been put in by the medical community and the executive committee to get Gaucher patients to wher they are today – being able to live a full life with the benefit of ERT. Dan was appointed Chairman of the Association in March 2012.
Jeremy Manuel OBE - Jeremy co-founded the UK Gauchers Association in 1991 and was the Chairman until 2012. He was a founding member and Chairman of the European Gaucher Alliance (EGA) which is an umbrella organisation of European Patient Groups. He is further a Trustee of the Helen Manuel Foundation a Charitable Trust established to raise funds for research into Gaucher disease.
Through his work with the Association Jeremy has represented the interests of Gaucher patients both in the UK and abroad to clinicians, scientists, government and industry. Jeremy is a patient representative to the UK Department of Health National Commissioning Group on Lysosomal Storage Disorders.
Jeremy is a practising Lawyer and an accredited Commercial Mediator. He was awarded the Freedom of the City of London in 1994 and an OBE in the Queens New Year Honours List 1999 for services to the Gauchers Disease and is a Fellow of the Royal Society of Arts.
Alan Rosen (Director) - Alan is a retail entrepreneur, having been involved in retail businesses for over 30 years. Alan lives in Stanmore and is actively involved in the local community as Chair of local residents association for over 5 years . Alan became involved with Gauchers Association after his son Jamie was diagnosed a type 1 sufferer in 2002. Alan is a keen negotiator and enjoys chairing fundraising committee which has raised much needed funds for various projects. He is a keen cyclists. Alan is married to Sharon and besides Jamie they have a daughter Carly. Alan and Sharon are proud grandparents to twin girls who are coming up to their first birthday.
Emily Lew - (Director) Emily was diagnosed with Type 1 Gaucher Disease when she was a teenager. In more recent years, Emily decided to try to "give something back" to the community in return for the support she received by becoming involved with the Association. Emily hopes that her involvement with the Association will lend a patient's perspective to the group. Emily is a solicitor and lives in London.
Tanya Collin-Histed (Chief Executive) - Tanya's daughter Maddie was diagnosed with Type 3 Gaucher disease in 1996 at the age of 17 months. In 1997 Tanya joined the association to support families with children who have neuronopathic Gaucher disease.
Tanya's main focus has been setting up conferences and educational booklets for the families. Since 2005 Tanya has been working part time for the Association as it's Chief Executive and manages the day to day activities of the charity. Andrew Bloom (Treasurer and Director) - Andrew was diagnosed with Type 1 Gaucher Disease in 2008. He feels very fortunate to have access to ERT and recognises that if he had been born a generation earlier his struggle with Gaucher disease would have been significantly harder. Andrew has benefitted greatly from the UK Gauchers Association and wants to assist the association in its continued growth. Andrew is married to Della and they have three children. He is a qualified chartered accountant and runs a London based mortgage lending business.
Maddie Collin (Director) - Maddie was diagnosed with Type 3 Gaucher disease in 1996 at the age of 17 months. Maddie joined the board in order to learn more about current issues facing Gaucher patients, get involved in fundraising and to represent type 3 patients at meetings. Maddie feels very privileged to be a part of the Association, which has provided much comfort and support over the years, both to herself and her family. Maddie is currently a student at the University of Bath studying Social Sciences and lives in Dursley Gloucestershire
The Team working from Dursley, Gloucestershire consist of Chief Executive Tanya Collin-Histed, Information & Charity Officer Sarah Allard, Patient & Family Support Worker Helen Whitehead, Administration Assistant Claire Lightfoot and European Gaucher Alliance (EGA) Projects and Administration Co-ordinator Jo Higgs.
The UK Gauchers Association are delighted to announce that the fund has now been expanded to provide support in other areas of education. Find out more here