Rare disease champion recognised by IMB

27 Sep 2013

External links: Watch more of Massimo's story at ABC's Australian Story (aired 21/10/13) or visit Dr Ryan Taft's web page for links to more media coverage.

A father who has gone out of this world to find a treatment for his son’s illness was today awarded the inaugural IMB Champion Award.

Stephen Damiani was recognised for his efforts in advocating for patients and families of those affected by a rare group of diseases called leukodystrophies, which led him to establish the Mission Massimo Foundation.

The Foundation is fundraising to develop a treatment for leukodystrophies by selling tickets in a raffle to win an out-of-this-world adventure with the Space Expedition Corporation.

IMB Director Professor Brandon Wainwright said Mr Damiani’s drive and determination was an example to everyone.

“Mr Damiani refused to give up when his son Massimo was diagnosed with a leukodystrophy, a rare developmental disorder,” Professor Wainwright said.

“Instead, he has worked tirelessly with scientists, clinicians and other patient families from all over the world to advance research in this field and work towards a treatment for children suffering from leukodystrophies.

“The culmination of this work has been this amazing raffle which offers the opportunity of a lifetime – to blast into space and experience weightlessness from 100km above the Earth.”

The award was presented today after a lecture by IMB laboratory head Dr Ryan Taft, who played a vital role in achieving a diagnosis for Massimo.

“It was particularly fitting that Stephen be presented with the award today, as it marks one year since we identified the gene that was causing Massimo’s illness,” Dr Taft said.

“I am in awe of Stephen’s persistence in the face of adversity and his dedication to improving the life of his son and other children suffering from rare diseases.”

Everyone who attended the lecture and award presentation was entered in a draw to receive a ticket in the Mission Massimo raffle into space, worth $1000.

The lucky winner was PhD student Michelle Quezada Iniguez.

To purchase a ticket in the raffle to win a trip into space worth $100,000, please visit the Mission Massimo website.

To donate to Dr Taft’s research into rare paediatric disorders, please call 07 3346 2185 or visit www.imb.uq.edu.au/donate

The Institute for Molecular Bioscience (IMB) is a research institute of The University of Queensland that aims to improve quality of life by advancing personalised medicine, drug discovery and biotechnology.

Contact: Bronwyn Adams - 07 3346 2134, 0418 575 247, b.adams@imb.uq.edu.au