I started this wonderful organisation way back in 1979. My niece was born with Dystrophic Epidermolysis Bullosa in 1975 and this was devastating to us as a family. As this time, we discovered that both my mother and my sister also had this condition following biopsies on both of them. Around 1978 we heard of a group in Townsville, and so I began raising money and sending it to that group. Eventually, my sister heard of a little boy who lived at Loftus and suggested that I contact his mother. I contacted Jenny Abercrombie, who said she had always wished there was a support group to help parents cope with EB, so, with my experience running other organisations, we started the ball rolling. Together with my mother, the late Doris Rohan, my daughter, Leanne Wynne and a friend, the late Babs Young, we met at Jenny’s home and DEBRA NSW was born. Also at the meeting was another mother, Mrs Thomas from North Sydney (apologies if I have her name wrong). We set about registering as a charity. Very soon we contacted and/or were contacted by other parents and intertested people, many of whom had no connection with EB, but wanted to help.
Jenny was President, Leanne Treasurer and myself Secretary and we worked tirelessly to raise funds and awareness of this largely unkown skin disease. How excited were we when we had our first $1,000 in the bank! I add my thanks to Colin Powell and his daughter Anne for their long a loyal support. The ladies and gentlemen of the Sans Souci Busy Bees and Lawson Women’s bowling club were other groups of people who gave us $1,000 each year for so many years.
Leanne and I continued in our roles until 1990 when we felt it was time to retire. I was made a Life Member in 1990.
The rest, as they say, is history. I am very proud to have been able to support so many people, many of whom I have never met, but are very familiar to me, and to witness how far DEBRA has come in all these years.