- About us
- The Auxiliaries
- Events Calendar
- Happenings
- Awards
- Merchandise
- Kids Corner
- How can you help?
- Publications
- Links
- Contact us
Print version
Cystic Fibrosis Research Trust
Founded 1999
-
President: Melissa Le Mesurier
-
Secretary: Silvia Pozzuto
-
Treasurer: Graeme Neill
-
Medical Chair: A/Prof Philip Robinson
The Cystic Fibrosis Trust Story
The Royal Children's Cystic Fibrosis Research Trust Auxiliary was formed in 1999 by a group of parents and medical professionals who wished to fund research into Cystic Fibrosis (CF), a life threatening genetic disorder that severely affects lung function and digestion.
Since its formation, the Trust has appointed five Research Fellows and paid their full-time salaries to undertake research into Cystic Fibrosis at the Royal Children's Hospital.
Our plan was to raise over $1 million over the four years to fund CF research projects and we acheived this incredible milestone at our 2007 Annual Gala Ball. Other other fundraising efforts that have contributed to this goal is selling DeBortoli wine under a CF label and organising some wonderful fun family days such as Trivia Nights, Sportsman's nights, Ladies Luncheons & fun runs/walks.
For more information on what is happening and how you can help us "Create A Future" please contact Silvia Pozzuto on 9345 6259 or email silvia.pozzuto@rch.org.au.
Annual Report
As the Royal Children’s Cystic Fibrosis Research Trust enters its eighth year, it is exciting to report that we are on target to hit the $1 million fundraising mark within the next 12 months.
Our main fundraiser each year is the annual Gala Ball and last year’s event at the Sofitel Hotel was another fantastic night that raised the outstanding amount of $103,000.
The “Angling for a Cure” fun run held on 22 April was also a great success for our Auxiliary with $15,000 raised . We would like to thank the Anglers Tavern for their ongoing support of this event.
Since the formation of our Auxiliary seven doctors have been employed to work on CF research projects. Our eighth doctor, Dr. Atul Guppta from the
We would like to thank our friends from Caring Friends for CF Auxiliary and Lifetime for CF Auxiliary who also work very hard to ensure the cure for Cystic Fibrosis is closer every day.
Thank you to all our supporters, we achieved all that we have because of you.
What is Cystic Fibrosis
Cystic Fibrosis is a life-limiting genetic disorder which severely affects lung function and digestion. As yet there is no cure. However, with early detection and treatment, the quality of life, and the longevity, of those with CF can be greatly improved. This is why medical research into CF, such as that undertaken by the Trust is vitally important.
Our Achievements
In the last year research directly funded by the Trust has been presented at the British Thoracic Society meeting in Manchester, the American Thoracic Society meeting in Seattle, the European Cystic Fibrosis meeting in Belfast North Ireland, the Australasian CF meeting in Melbourne, and the North American CF conference in Anaheim USA.
Since its formation, the Trust has appointed six Research Fellows and paid their full-time salaries to undertake research into CF at the Royal Children's Hospital.
Dr Mandie Griffith (Australia) reviewed the RCH clinic's cross infection rates, and studied ways in which people with CF respond to different infections within the airways
Dr Heather Elphick (Liverpool UK) studied computerised breath sounds analysis as an assessment tool for early lung disease in CF.
Dr Damian Wood (Nottingham UK) commenced studies into several areas including cilial function in the airways in CF and the use of various x-ray techniques in assessing the long term safety of indwelling venous catheters in CF patients.
Dr Ranjin Suri (London UK) examined the work of breathing in children with CF especially the amount of work the lungs and chest muscles of a person with CF have to do when they are well and unwell.
Current research:
Dr Gaudenz Hafen (Switerland) began work in early 2004 and will spend two years at RCH examining clinical scoring methods for children with CF. The last CF clinical scoring system (a way of accurately summarising the clinical status of patients over time) was developed 30 years ago - and developing a new system has great potential to improve treatment.
How you can Help
There are many ways you can help the Royal Children's Cystic Fibrosis Research Trust achieve its goals:
Donation - Make your donations count! As the Trust is managed and run by volunteers 100% of all monies raised by the Trust goes towards medical research into Cystic Fibrosis. Your donations are fully tax deductible as the Trust is an Auxiliary of the Royal Children's Hospital
Fundraising - organise an event which donates its profits to the Trust. We can advise you on what you need to get started.
Corporate Sponsorship - Sponsor one of our medical projects our underwrite one of our fundraising events.
In kind donation - you or your company could supply goods which could be sold or auctioned by the Trust at one our our fundraising events. Alternatively you could offer your employees' time or expertise to assist our voluntary committees.
Bequests - you or a loved one could support the Trust's work through a bequest.
Volunteer - if you have a few hours or days a year, the Trust always welcomes willing helpers. Duties can include manning our stall at the Royal Children's Hospital, administration duties and general assistance to our fundraising committees.
Join our Committee - there's nothing more satisfying than helping others. Cystic Fibrosis needs a higher profile in the wider community and you could help us make a difference. Our committee meets monthly at the RCH.