Anna Pak Poy & Marc Coupar's son, Sebby, was diagnosed with Tay-Sachs in December 2017, at 7 months old. Sebby sadly passed away in March 2019 at 22 months old. Sebby is a sparkly, charismatic treasure who continues to inspire many with his spirit and courage - most of all his parents, who established Rare Find Foundation.
The focus of the foundation is to support families throughout the diagnoses period and beyond, establish a disease registry, create a 'Centre of Excellence' for the medical community in Australia, fund and support research, create awareness and promote screening.
Support | Research | Awareness
Providing support services and creating a community for the families and carers affected by these conditions.
Alongside our counterpart organisations, we strive towards providing a cure for these relentless diseases, by supporting the dedicated researchers who are focused on discovering innovative treatment methods.
Creating awareness of these conditions to help promote carrier screening, prevention and early diagnosis.