About Us
Who we are
A Letter From the Chair, Anna
My name is Anna Pak Poy. I am the Founder and Chairperson of Rare Find Foundation and, most importantly, the mother of two beautiful children, Sebby and Layla.
Sebby was diagnosed with Tay-Sachs disease in December 2017, at seven months old. Sadly, Sebby 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.
Layla was born in August 2019, so my children never got to meet. Needless to say, Sebby’s passing left us heartbroken.
Through our own experience of diagnosis and living with Tay-Sachs disease, I saw that there was a real gap in support in Australia. Building on my professional experience as a company owner, I was inspired to start Rare Find Foundation in 2019.
A diagnosis of Tay-Sachs or Sandhoff diseases for your child or loved one will likely be one of your most challenging experiences. Rare Find Foundation was created in the hope that it provides you with information, support and reassurance throughout your journey. We hope that the resources we have developed will help you to care for and support your child or loved one, and that you find a level of empowerment and comfort knowing that you are not in this alone.
You are part of a community of families and carers in Australia, and indeed throughout the world, who have been through or are going through a journey similar to yours. While that may be comforting in itself, we are also happy to connect families and carers who wish to strengthen their connection and support.
It is our sincere hope that the resources we have developed help you to make the most of every precious minute with your child or loved one.
Please reach out to the Foundation with any questions or requests for support and assistance. We are no more than a phone call or email away, at any time of the day or night. I refer back to the words I wrote above: Receiving a diagnosis of Tay-Sachs or Sandhoff diseases in your child or loved one may be one of your most challenging experiences. I understand completely. Rare Find Foundation is here to support you through this experience.
Anna Pak Poy
Chairperson
Our board
Rare Find Foundation has ambitious goals, therefore we need to have a strong Board to support us. Our Board comprises incredible, passionate people with a wide range of experiences, including a carer of an individual with Tay-Sachs or Sandhoff disease, and members from clinical settings, research, individual and systemic advocacy, business, social and community support settings.
She has attended the European Tay-Sachs and Sandhoff disease family conference in Germany (ETSCC), to learn and to help establish the Rare Find Foundation in the broader community.
Anna also brings business acumen and expertise to the foundation, as a successful company owner and Managing Director.
He maintains a conjoint academic appointment with the University of Adelaide, School of Medicine and maintains a basic sciences, translational and clinical research programme that strives to inform the development of novel therapeutic approaches for lysosomal and related neurodegenerative disorders; through which, he has been privileged to meet and assist patients and their families impacted by GM2 Gangliosidosis, from Australia and the wider international community.
Kate is passionate about campaigning for the rights of children’s access to healthcare
and health services.
Her role as CEO of Parkinson’s SA has given her strong expertise in business development, key strategic partnerships, philanthropic grants and communications.
Olivia is passionate about community health and improving the lives of those with neurological diseases.
Adam is also a former State President and National Treasurer of the Australian Graphic Design Association, a founding member of the South Australian Spirit Producer’s Association, whilst serving on multiple boards, from schools, to fundraising charities and startups.
Adam brings 25 years’ experience in design, branding, marketing and business strategy and a strong track record of growing successful companies and teams.
He believes in the power of advocacy and the importance of equal access to support and services.
Our patron
