P R E S S R E L E A S E - Rare Chromo
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Rt Hon Beverley Hughes MP, Minister for Children Young People and Families, (centre) and Allan Watt, Head of Group Brand Communication, The RBS Group, present £100,000 cheque to Dr Beverly Searle, CEO of Unique - The Rare Chromosome Disorder Support Group, Edna Knight, its founder, and other members.
P R E S S R E L E A S E … 18th January 2007
£100,000 award goes to tiny charity with huge aims
A tiny charity with big plans but with just one full-time worker has won the largest number of votes in the Royal Bank of Scotland/Daily Mail £1 million Christmas Giveaway, even though it was in competition with much larger children’s charities that are household names.
Unique, established in 1984, is a charity focused solely on providing information and comfort to families affected by rare chromosome disorders (“RCDs”). More than 5,000 families and scores of geneticists already take advantage of the services and support that Unique provides, taking advantage of the charity’s professional experience and its in-house database, which includes lifetime records of 6,000 different RCDs. The charity is run by a group of expert British parents, whose children all have RCDs themselves, so their understanding of the challenges surrounding raising a child with such a low-incidence disorder is unparalleled.
A diagnosis of any type of rare chromosome disorder is bewildering for parents. Inevitably, the condition will be unfamiliar to doctors and without Unique to provide information and understanding, usually families face a lifetime of uncertainty, isolation and, sometimes, despair. One in 200 babies is born with a rare chromosome disorder (more than with Down’s syndrome and cerebral palsy combined) yet so far, only an estimated 5% of all affected UK families are in touch with Unique.
The demand for Unique’s services has continued to grow hugely so the charity has been working on expansion plans. This RBS award will help Unique, through its forthcoming “Beating The Isolation” roadshow, to reach out to the “hidden” families: parents and carers who are disadvantaged socially and/or economically, perhaps living in a deprived area, perhaps from an ethnic minority or suffering disability themselves: families who find themselves challenged by the care of a child or young adult with an RCD that could cause a variety of profound and complex difficulties. At the same time the charity will publicise RCDs and the extraordinary challenges they bring to families to workers in the health, social care and education fields, as well as to the wider public.
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Unique – The Rare Chromosome Disorder Support Group
‘Beating the isolation of rare chromosome disorders’
Media contact:
Gillian Manvell, Chair, Tel 07941 016504 Email gill_manvell@
Family/professional contact:
Beverly Searle, CEO, Tel 01883 330766 E-mail info@
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