A volunteer-run organisation is working to make a real difference in the lives of people living with Crohn's disease and ulcerative colitis, otherwise known as Inflammatory Bowel Disease (IBD).
After many years treating patients with Crohn's disease and ulcerative colitis, it became clear to Dr Ross Elliott that there was a significant lack of funding available to support research into these conditions. Enlisting the help of friend John Gross, Dr Elliott started The Gutsy Group in 1999; the main aim being to help raise money to fund research into a disease that affects over 70,000 Australians of all ages and genders.
The Gutsy Group's vision is to fund high-quality research into inflammatory bowel diseases such as Crohn's disease and ulcerative colitis, with the aim of achieving better treatments, understanding more about the disease, and eventually finding a cure.
The term IBD refers to serious conditions that occur in the gastrointestinal tract where various sites become ulcerated, causing severe abdominal pain, weight loss, bleeding and diarrhoea. It can occur in people of all age groups but is most often diagnosed in young adults. Over the last 20 years, there has been a dramatic increase in IBD in the paediatric age group. The condition should not be confused with Irritable Bowel Syndrome (IBS) as they are quite different.
Those living with IBD do not discuss their symptoms openly and strive to maintain jobs and relationships despite the pain and discomfort of their symptoms. There is no cure for IBD and the cause is not completely understood. Currently, the treatment of IBD predominantly focuses on managing the symptoms and includes drug therapy, biologics and surgery.
Dr Elliott believes the purpose of the Group just makes good sense. "From an economic perspective, The Gutsy Group believes it is in Australia's best interest to understand Crohn's disease and ulcerative colitis and fund the necessary research, as the financial costs and burden from the diseases are high and rising," he said.
The Gutsy Group is run by a volunteer Committee of Management made up of members from various professional and personal backgrounds. Two sub-groups work under the Committee: one organising fundraising events and exploring financial support from the corporate sector; the other identifying viable research projects which the Group can support financially.
Since its establishment nearly 15 years ago, The Gutsy Group has gone from strength to strength and now holds two to three fundraising events annually and actively works to raise its profile in the public arena.
As with all charitable, volunteer-run organisations, both attracting financial support and harnessing the people power within its volunteer base are challenges.
"Our main aim is to raise $150,000 every year to direct towards specific research projects," said Dr Elliott. "However, being a volunteer organisation, one of our main challenges is that we obviously have limited resources, both financially and in terms of resources required to organise and execute fundraising events."
Another challenge the Group encounters is raising broader community awareness of a disease which few people readily discuss publicly. "The symptoms of the disease are not overtly visible and because few people talk publicly about this disease, community awareness remains low and understanding of the effects of the disease on the individual's physical, emotional and psychological well-being remains poor," said Dr Elliott.
In addition, high-profile Australians are not keen to speak publicly about the effects that either Crohn's disease or ulcerative colitis have had on their lives, so awareness of the diseases and their painful symptoms continues to remain low.
"Together, Crohn's disease and ulcerative colitis are more common than Parkinson's disease, yet the latter has a much greater public profile," said Jane Panaccio who is involved in the fundraising activities of the Group.
The majority of projects funded by the The Gutsy Group are clinical/research projects. Projects are selected by their Scientific Advisory Group and to date, all have made a substantial contribution to understanding IBD. Much of the research supported by The Gutsy Group has been published around the world in scientific/medical journals, which is great recognition and reward for their efforts.
"The study we're currently supporting is particularly exciting because it will reduce the negative symptoms of a drug that is known to treat IBD successfully, enabling more people to use the drug for longer and obtain relief from the effects of the disease," said Jane.
From 2007 to 2008, support from the Bennelong Foundation enabled Dr Jarrad Wilson from the Department of Gastroenterology at St Vincent's Hospital in Melbourne to produce the first prospective population-based Australian incidence and study of IBD. As a result of this research, Dr Wilson was awarded the gold medal in 2008 by the Gastroenterological Society of Australia for the best clinical research for a junior investigator.
The general public can help with The Gutsy Group's invaluable work by donating much needed funds. Visit their website at thegutsygroup.com.au for more information or to sign up to their newsletter. Alternatively, visit and share The Gutsy Group's Facebook page with family, friends and colleagues.
Other assistance is much appreciated via the donation of goods and services for fundraising events, so contact The Gutsy Group for more information.