Fabry Australia’s History
In 1994 David Davie was diagnosed with Fabry Disease at the age of 48. After researching and finding very little information about such a rare incurable condition, his wife, Margaret, wrote to the Australian Women’s Weekly with an article featuring her husband and his new predicament. As a result many other people who had been diagnosed with this same rare genetic disease came in contact with them and a group was formed. The first Fabry’s Support Group meeting, as it was called back then, was held on 4th June 1994 at the Murdoch Institute, Royal Children’s Hospital, Victoria with over 55 people in attendance. It was an outstanding success and the consensus of the meeting was that a Fabry Support Group be formed.
The Fabry Support Group was officially incorporated on 20th June 1994 and became a National Incorporated Association representing individuals and families diagnosed with Fabry disease from across Australia.
It was at this time that the Royal Melbourne Hospital Nephrology Department agreed to form a central Fabry Clinic at the Royal Melbourne Hospital. The reason being that individual doctors were likely to have limited experience in treating and managing the problems facing those suffering from Fabry disease and so the first clinic for Fabry patients in Australia was formed.
Fabry Australia did a lot of fundraising (sausage sizzles, cake stalls, craft stalls) to raise money to fund a medical student to do research into Fabry Disease, and the members of Fabry Australia happily volunteered themselves to be studied and tested for this project.
Enzyme Replacement Therapy (ERT) trials of drugs Replagal and Fabrazyme began in the year 2000 but were mainly available to those patients who were experiencing vital organ damage. This program was also available to some interstate patients but not all. In 2004 funding of the treatment of Enzyme Replacement Therapy became available for 55 patients with Fabry Disease via the Life Saving Drugs Program. This was a huge milestone in the treatment of Fabry patients.
David Davie passed away due to complications caused by Fabry Disease in November 1999. That year David’s daughter, Megan Fookes, continued the legacy that had been started by her parents. She served on the board of Fabry Australia and worked tirelessly for the Australian Fabry community. She resigned from her position as Director in January 2021.
In her 21 years of advocacy and service to the rare disease community, she became the co-founder of Rare Voices Australia, served on the board of FIN (Fabry International Network), and, in recognition of her services to the Australian rare disease community, was awarded the Medal of the Order of Australia (OAM) on Australia Day 2016.
Fabry Australia – Turned 25!
Fabry Australia celebrated its 25th Birthday in 2019. Fabry Australia acknowledged the milestone with a dinner dance as well as a cake which was made by Fabry Australia’s Committee Members; Linda and Gavin who also decorated the room.
Fabry Australia – Turned 20!
Fabry Australia celebrated its 20th Birthday in 2014. A lovely book was put together with lots of photos from the last 20 years.