Lions raise funds for DEBRA

Waimarino Bulletin, Volume 1, Issue 25, 22 November 1983, Page 4

Lions raise funds for

DEBRA

A rare and puzzling disease was the subject of a specially convened fundraising dinner at the Ruapehu Lions 'Lions Den' clubrooms in Ohakune on Saturday 12 November. The disease is known as dystrophic epidermolysis bullosa ('EB'1 for short) and afflicts about 70-80 sufferers in New Zealand, including jone who lives in the Waimarino. There is as yet no known cure or treatment and it is for this reason that a programme of fund-raising is being mounted to conduct research into this distressing disease. The co-ordinator of the programme — known as DEBRA (Dystrophic Epidermolysis Bullosa Research Association) — Jillyan Greville of Hastings was invited to Ohakune to speak at the fundraising dinner organised by the Ruapehu Lions. The dinner was attended by about 70guests and. with raffles, raised $400 for DEBRA. These funds will provide for research to be conducted into the disease at the University of New South Wales in Sydney. Because of the cost of research the New Zealand DEBRA committee

has decided to join for.ces with the Australian programme to attack this disease which also afflicts many sufferers across the Tasman. Jillyan Greville, who became interested in EB when it was discovered that one of her nieces suffered from it, said that because so little was known about it there may be other peoo4fl| who may be suffering frorm^ mild form of the disease without being aware of it. By publishing details of svmptoms. causes and effects in the media it is hoped that both known and as yet unidentified sufferers will benefit from the research programme. These will appear in next week's edition of the Bulletin.