By Jennifer Cowley, Representative of OIFE’s Associate Member Australia

My name is Jennifer (Jenny Cowley). I have Type 1 OI and so have 13 of my family members. I represent the Osteogenesis Imperfecta Society of Australia as the newly elected President. OI affects me personally by slowing me down when I get older. When I don’t do OI-work, I like cooking, gardening, art and spending time near the beach.

The OI Society of Australia was founded in 1977 by parents and friends of those with OI in order to create a point of contact for newly diagnosed families. Today it is representing 139 members. It is run entirely by volunteers. We have a biannual conference for our members. It is held over 2 days and all members are welcome to attend. Our biggest challenge so far, was Covid which excluded us from having our face to face conference.

Our Conference in 2022 was held from 30th September – 2nd October in Sydney. Our 45 years celebration coincided with our conference and was a huge hit. There was a variety of speakers including guest speakers incl. Dylan Alcott and Samantha Bloom. The gala dinner was a wonderful time had by all. Lots of catchup chats, new friendships formed, networking, and most of all information. Professor Sillence, which you probably all know, with the assistance of Ms Alison Senn, has played a role since 1975. Over the years there has been more than 22 genetic types of OI diagnosed.  He has worked with his colleague Dr Jenny Aunt for many years.

Our plans for the future are to provide members with a database of medical professionals in Australia.  We will continue planning a biannual conference for members to attend and to assist members where we can. I think the most important task for a national OI-organization is to have updated information and resources on hand for our members. My message to the readers of the OIFE Magazine is: Reach out when you need it! You never have to face OI alone.