Pathways to Giving

Pearl is a valued member of the IDFA organisation. From being on the board to being a Circle of Support Peer Mentor, she has contributed in many ways. Pearl has shared her story with us and media outlets to raise awareness for those living with immunodeficiency.

“I don’t want my struggle to make me a victim. I want my battle to make me someone else’s hero.” This quote resonated with me as it sums up the essence of why I volunteer for IDFA. I spent the first decade after my diagnosis pretty much alone with no information and no idea what to do when I got sick. When I found IDFA, I found understanding and a community. The road to diagnosis is long and to know you are not alone is immensely comforting. 

Jenny is a long-time member, who has worked tirelessly on advocacy campaigns for IDFA. Throughout her life, she has volunteered in many aspects of her life, including at her local primary school and scout groups. In 2017, after publishing a book, she turned her focus to SCID Newborn Screening. Through research and advocacy, Jenny played a major part in our campaign to get SCID added to the Newborn Bloodspot Screening Australia-wide.

“It is important to support those who are making a difference in people’s lives. Our researchers need support in lots of different ways. Most people can’t make large financial donations, but we can help in other ways such as through patient stories and advocacy. Contacting members of Parliament, local members, and local media can highlight immunodeficiencies and the work of IDFA. Attending local community events and talking to people about these conditions all help. From giving your time you receive more back.”

Dr Melanie Wong is a Paediatric Allergist and Immunologist and head of the Department of Allergy and Immunology at the Children’s Hospital at Westmead. Melanie is currently chair of the IDFA Medical Advisory Panel and sits on our board. Over the years, her contribution to research and advocacy (specifically the adoption of SCID Newborn Screening) has been invaluable, and we truly appreciate her efforts for those living with immunodeficiency.

“There is great value in being a health care professional member of a patient support organisation. Not only is there the potential to directly contribute to improved health outcomes for our patients and their families, but the better understanding of the impact of disease and their treatments from a patient and family perspective enhances our clinical interactions and practice to the benefit of our patients and community.”

Tricia is a valued volunteer within the IDFA community. She has contributed her wealth of knowledge by taking a leadership role in inviting new, or fewer experienced members to engage, to feel well-supported on their journey. She has been involved in many aspects of the community including webinars, conferences, being part of the National Patient Advisory Panel and working to host member meetings in her area.

“I am truly grateful to be a part of the many programs, webinars, conferences, National Patient Advisory Panel and Member Meetings, in bringing both education and support to members. I have been most fortunate to be invited to take a leadership role in inviting new, or less experienced members to engage, so to feel well-supported on their journey.”