Ground Crew

President | Massimo’s Dad and Co-Founder of the Mission Massimo Foundation

Like most young fathers Stephen had never heard of white matter disorders until the early morning of Friday 24th July 2009 when his son was diagnosed based on diffuse signal abnormalities identified through magnetic resonance imaging. Since that day Stephen has worked relentlessly to understand every aspect of white matter disorders, from diagnosis through to treatment. When confronted with the possibility he may never learn the cause of his son’s condition Stephen dedicated himself to achieving a diagnosis and sought the best  researchers to assist with Mission Massimo. After 1,161 days the gene responsible for Massimo’s condition was identified and a new white matter disorder classified with the findings published the American Journal of Human Genetics (AJHG). As a result of his efforts Stephen has been invited as an Australian representative on the Global Leukodystrophy Initiative (GLIA).

Treasurer | Massimo’s Mum and Co-Founder of the Mission Massimo Foundation

Sally is the mother of Massimo Damiani and his younger twin brothers Marco and Leonardo. Like her husband Stephen, Sally has poured her efforts into understanding all that she could about Leukodystrophy since first hearing the term in July 2009. Whilst the focus of Mission Massimo is to support researchers and clinicians to find treatments for paediatric white matter conditions, Sally’s main mission is keeping Massimo happy and healthy whilst they hope for a future treatment that may arrest the development of Massimo’s disease or possibly reverse its debilitating effects.

Secretary | Massimo’s God Mother and Co-Founder of the Mission Massimo Foundation

Joanne (Jo) first met Massimo in 2009 when she was asked to provide respite care to the Damiani family by their local community. Jo has a long history of working with children with special needs both in home and educational settings. Jo and Massimo formed a close bond almost immediately and Jo is now well and truly part of the family. Jo is studying Early Childhood and attends kinder with Massimo at his local community kindergarten providing him with support in the classroom to ensure he is able to make the most of his early childhood experience.