Sharon Caris is Executive Director, Haemophilia Foundation Australia
It was a privilege to announce at the recent Gold Coast Conference dinner that the Haemophilia Foundation Australia Research Fund would be receiving a significant boost due to a wonderful bequest by Maxine and Alan Ewart from South Australia. Maxine died during 2014 and Alan the year before.
In 1989, when Haemophilia Foundation Australia (HFA) was just 10 years old, the Medical Advisory Panel, now the Australian Haemophilia Centre Directors’ Organisation (AHCDO), recommended that HFA establish a research fund. The HFA Council at the time knew this was an important way forward to improve treatment and care, so capital appeal committees were formed by haemophilia foundations around the country to raise funds for research.
The Haemophilia Foundation Australia Research Fund was established in 1994, and the first major grant was made in 1996. Since that time, thirty grants have been made – some small enabling grants and some larger on a range of topics spanning psychosocial research, laboratory research, through to gene therapy. Over the years almost $630,000 has been distributed to different kinds of Australian based research.
Although there has never been any doubt as to the importance of the research fund, its sustainability has always been a concern and with a modest $450,000 balance over recent years, the research committee has been somewhat limited in its endeavours.
The bequest of almost $1.3m from the Ewarts, who were loyal and committed HFA and HFSA volunteers who had worked hard to get the Fund established, has given the HFA Council the opportunity to review the Research Fund, and will go a long way to making sure it meets its objectives.
HFA records are very clear that Alan and Maxine were deeply committed to improving care and treatment and helping families understand more about living with haemophilia – Alan had haemophilia, and he had worked at the University of Adelaide. He was on the HFA Council and attended many meetings and conferences with Maxine, including World Federation of Hemophilia congresses and meetings in the early history of WFH. They were both active on the HFSA committee taking on office-bearer roles for many years, and Alan edited the HFSA newsletter. Many of the HFSA records we have archived have been written by Alan – they are neat, meticulous for their accuracy and detail and always had a clear education message and evidence of deep insight of the impact of haemophilia on individuals and their families.
We were pleased that Alan’s sister Jo and her husband Bill Fuller, their son Andrew Fuller and their son Mark Fuller’s partner, Troy were able to travel from Adelaide for the Gold Coast conference Dinner to help us celebrate Maxine and Alan’s generosity.
HFA will soon be working with the research and clinical communities and people with bleeding disorders to review and re-develop the Fund. Council wants to be sure it meets the expectations of people like Alan and Maxine when it was established, and that through the research it funds that it will make a difference for people living with haemophilia and related inherited bleeding disorders.
The HFA Council recently decided that grants made from the revised Research Fund would be known as the Alan and Maxine Ewart Research Grants.
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