Jim died very peacefully in St Catherine’s Hospice with Margaret, Jane, Helen and Richard at his side.  I am sure I speak for all of us in extending our condolences to them during this most difficult time. Before Jim and Margaret established the group in 1992, we were all enduring the isolation, lack of information and inappropriate treatments experienced with rare disorders.  Recognising this, Jim set up the support group with a handful of members that have now extended to 250 families within the UK, links with support groups in America, the Netherlands and Norway and the running of very successful annual conferences.  Jim strove to establish medical advisor links to ensure we had regular and timely access to information on the best treatments, support services and advice.  These links led to the development of national partnerships with the government to have a voice in the health care planning and with links to the media, the most notable the BBC documentary, Bitter Inheritance. Despite the unconceivable difficulties and pain he suffered, Jim inspired us in his ability to make the most of his life circumstances.  Jim was our counsellor and friend, whether on the phone or in his company.  Jim rarely spoke of his condition, always wanting to hear of others, listening, consoling and lifting our spirits, along with his natural warmth and sincerity Jim had an incredible sense of humour and a wonderful presence of being. Jim’s gift to us is incalculable and irreplaceable.  He has left us an invaluable network that will ensure our children and future generations receive the best information to make choices and treatment options available. I am sure I also speak for all of us in sincere gratitude to Margaret for her continued support with the group.  Over the past 12 months Margaret has virtually run the group with the help of Helen, Jane and Richard despite caring for Jim.  With the help of the Committee, group members, our patrons and medical advisers we aim to continue the group the best way we can. We will always have a permanent vacancy for our counsellor and friend, but we can continue building on the legacy Jim left for us and to make the most of life as Jim did.  Sally Webster, Vice Chair - February 2003