This year the Melbourne Rugby Club is proud to be supporting the Mission Massimo Foundation. Tragically, Massimo Damiani unexpectedly passed away late last year. While he never had the opportunity to play rugby due to his terrible illness, he loved to watch his twin brothers Leonardo and Marco play for the Unicorns.
Massimo would be absolutely thrilled to see the foundation represented on the pitch this season – raising awareness and helping to finish his mission to end childhood leukodystrophies.
Imagine, the most precious thing in the world to you, your child, is struck down by a mysterious illness. On the eve of Massimo Damiani’s first birthday, nine years ago, the developmental milestones his parents, Stephen and Sally, had lauded were vanishing before their eyes.
A barrage of tests were ordered, many of them intrusive, highly distressing and painful. However, the science of the day could offer no answers, only a general diagnosis of leukodystrophy. Without knowing the precise genetic cause of Massimo’s condition there was no hope of treatment.
Enter Mission Massimo, a bold plan to sequence and analyse the whole genomes of Massimo and his parents in parallel in an effort to pinpoint the unique genetic variations causing his illness. Thanks to an incredible international collaboration between clinicians, researchers, parents and industry, Massimo was the first ever patient to be diagnosed with a disease new to medicine using this approach.
Mission Massimo showed us all what the very best of humanity can achieve when working together towards a common goal. Developing new therapies for these rare genetic diseases is within our grasp. The Mission Massimo Foundation is a non-profit organisation that promotes the prevention, diagnosis and treatment of childhood leukodystrophies. Together, we can make today’s science fiction tomorrow’s science fact and finish Massimo’s mission.
To find out more or to support the foundation » click here