The Royal Children’s Cystic Fibrosis Research Trust was formed in 2000 by a group of parents in conjunction with Associate Professor Philip Robinson, Director of The Royal Children’s Hospital Respiratory Medicine Department. The group seeks to fund research into cystic fibrosis (CF), a life-threatening genetic disorder that severely affects lung function and digestion.
Research projects are based at The Royal Children’s Hospital (RCH), one of the world’s leading paediatric teaching hospitals, which has more than 300 CF patients under its care.
Last week the trust held one of their major fundraisers, the 6th annual CF Trust Fun Run, under sunny skies in Moonee Ponds.
Over 700 participants elected to do either the challenging 8km run including the now famous ‘heart break hill’ or the leisurely flat 4km walk and run around the river starting and finishing at the Anglers Tavern.
This years event was the largest ever and organisers were delighted that this years event has raised over $45,000, which is another record.
These funds are 100% directed to CF research at the Royal Children’s Hospital which supervises the care and treatment of children with this life limiting incurable disease.
Dr Phil Robinson, the trust’s medical chairman, said the day was a wonderful event made possible by the efforts of the many volunteers and supported by so many in the CF community and local community in general.
“Our trust’s motto ‘Creating a Future’ reflects our desire through research to improve the lives of people with CF and this wonderful amount will help us in our continued push to achieve this”, Dr Robinson said.
Details of further fund raising events organised by the trust can be found on the trusts website
About Cystic Fibrosis
Cystic Fibrosis (CF) is the most common life-threatening inherited disease in Australia. It affects 1 in 2500 children and 1 in 25 people are carriers of the CF gene.
CF primarily affects the respiratory and digestive systems, and patients generally suffer chronic lung infections.Many suffer complications such as diabetes and osteoporosis, and many ultimately require lung transplants.
CF is currently incurable however 80% of those born with CF this century are expected to reach their 30th birthday.
When Simon passed away suddenly in 2007 from a heart condition at just 27, his friends Alicia and Hamish Maclean decided to honour his memory by raising funds for the Cardiology department at The Royal Children’s Hospital.
Alicia and Hamish knew that Simon had spent time at the RCH as a child, so on the 1st anniversary of Simon’s death in 2008 they held the first Making A Difference ball, raising more than $10,000 to fund the purchase of a cardiac MRI coil for use with babies suffering cardiac diseases.
The initial experience inspired Alicia and Hamish to want to continue to make a difference.
“It was a lot of fun and wonderful to be able to honor Simon” Alicia said.
In July 2010 the Macleans held the second Making A Difference ball which raised an incredible $16,292.00 to fund the purchase of five Holter Monitors for the Cardiology Department.
The Macleans visited the RCH to present the monitors to Michael Cheung, the Director of Cardiology, and Alexandra Savis, the acting chief cardiac technologist.
The Holter Monitors are small and light and can be discreetly attached to a patient to enable the recording of the heart rhythm for between 24-48 hours whilst they are at home taking part in normal activity. The data captured can then be analysed by RCH doctors at a later date to help detect abnormalities in the heart rhythm.
The purchase of the new monitors has meant there are more available at any time for patients to take home, which has substantially reduced the waiting times to take part in the study. Families have also been less likely to need to make a return trip to the hospital just to have a monitor fitted.
Thank you to the Macleans and all their supporters for their continued fundraising efforts for the RCH. We truly appreciate all your hard work.
Lochie Faust is a boy with a rare condition and a fighting spirit who has inspired his sports club to make a difference by raising funds for The Royal Children’s Hospital.
Lochie was just 8 months old when he was diagnosed with retinoblastoma, a malignant cancer of the eye. Now 13 years old, Lochie is partially blind as a result. But the rare condition hasn’t stopped Lochie from enjoying what he loves, swimming.
Lochie is an inspiration to his teammates at the Hoppers Crossing Swimming Club and hasn’t let his disability hold him back. Now Lochie, and his swim club are determined help find a cure for retinoblastoma, a condition that effects one in 14,000 children.
The swimming club is holding a 24 hour swimathon on 24 March at the Wyndham Events and Leisure Centre.
The team will swim a combined distance of 5,500 kilometres, a total of 220,000 laps. They are aiming to raise $15,000 to support the fight against retinoblastoma.
You can join the swimathon or sponsor a swimmer in this fantastic cause, simply visit the swimathon website.