Meet the team

AusPIPS Inc. is overseen by a Committee of volunteers.

We also have a collective of medical and allied health professionals, who contribute in an advisory capacity to its work. As Primary Immune Deficiency (PID) impacts many areas of health, our advisory panel has contributors from various medical and allied health professions. The advisory panel provides the committee with information and expertise to continue our work which includes patient advocacy and support.

Committee members

Jackie Murphy

President

Jackie was diagnosed with Common Variable Immune Deficiency (CVID) in 2006, along with Bronchiectasis which resulted from going undiagnosed with CVID for 16 years and many other co-morbidities that have cascaded since diagnosis. In the last 18 and a half years since diagnosis, Jackie has been heavily involved in the primary immunodeficiency (PID) community and she is passionate about the quality of life improving for Australians with PID.

Jackie has been volunteering for almost forty years with various organisations in official and unofficial roles, from sitting on boards and committees to simply volunteering. She was the Patient Representative on the last Australian IVIg Criteria review Advisory group in 2011-2012, has worked with the ARCBS, as a volunteer Blood bank Ambassador since 2007 and has CPE (Clinical Pastoral Education) level 1.

In addition to being President of AusPIPS since it was founded, Jackie is a Consumer as well as a member of the Consumer Research Advisory Group (CRAG) at the at the Royal Melbourne Hospital, a consumer representative on the National Immunoglobulin Governance Advisory Committee (NIGAC) and a member of the National Blood Authority’s SCIg IWG.

Jackie is a passionate advocate for people with PID and as President of AusPIPS has lead key achievements including:

·       Securing access to AstraZeneca’s COVID 19 prophylaxis drug Evusheld for severely immunocompromised Australians in 2022. This opened access nationwide in policy and supply from an estimated 10,000 to 400,000 Australians over five and a half weeks, in turn allowing them to safely leave isolation.

·       Playing a key role in securing a Nationwide Funding Stream for SCIg (Subcutaneous Immunoglobulin) which started on 1 July 2024.

Jackie has been a passionate supporter of SCIg, especially since 2016 when as President of AusPIPS she started the long running SCIg project to secure equitable access for people who qualify for SCIg in Australia. Jackie personally benefitted from this after switching to SCIg from IVIg in December 2017. While the SCIg project has taken a lot of engagement with multiple stakeholders across Australia, much ground has been gained and the lives of thousands of people who’ve gained access to SCIg have changed, often dramatically for the better. Jackie is leading AusPIPS to work with other stakeholders and continue to push to resolve any lingering issues.

Before Jackie started to have health problems with CVID in her early 20’s and became too unwell to work, she studied management and worked in administration. She was later contracted to work for a large online server for over a decade.

Jackie has a great deal of insight into a patient’s life, as she also has regular treatment and physiotherapy. To manage her CVID and Bronchiectasis, she had IVIg every 21 days, before switching to weekly SCIg in December 2017. Regular Immunoglobulin infusions keep Jackie alive and as well as possible, giving her quality of life back. She also follows a strict physiotherapy regime, which includes swimming weekdays, year-round. She is dedicated to also improving the lives of other Australians living with PID.

Emily Edwards

Vice President

Emily is currently a Group Leader of the Primary Immunodeficiencies (PID) Group in the Department of Immunology at Monash University. Emily first started research in to PIDs in 2014 in Sydney before moving to Melbourne for a new challenge. She is researching how genetic mutations cause reduced immune function which results in increased severity and incidence of infections, as well as increased prevalence of diseases including autoimmunity and cancer. Alongside this Emily is investigating the drivers of common comorbidities of PID including autoimmunity, bronchiectasis and gastrointestinal disease in hopes of finding new biomarkers and treatment targets for these diseases. She hopes that in the future her research will contribute to better diagnostic, prognostic and therapeutic strategies for people with PID. Emily aims to deliver a patient centric research program that aligns with patient and public health priorities.

Emily is currently a member of the Jeffrey Modell Diagnostic and Research Centre for Primary Immunodeficiencies in Melbourne, part a global network of Jeffrey Modell Foundation Centres. The centre is a multi-institutional network of researchers and clinicians across Melbourne (www.jmf-melbourne.org.au). In addition, Emily is also a member of the ASCIA Immunodeficiency Committee tasked with ensuring delivery of the National Immunodeficiency Strategy.

Emily joined AusPIPS as vice president in 2019. Emily is passionate about bringing positive change for people with PID including increased public awareness of PID, as well as policy change to improve treatment options for people with PID. Together, in these roles Emily wishes to contribute to improved care of patients with PID, in order to improve patient quality of life and life expectancy.

Bernadette Jones-Freeman

Secretary

Bernadette brings a range of expertise to her role as Secretary of AusPIPS. With a foundation in science from her Bsc (Hons) in Biomedical Sciences at the University of Ulster, UK, Bernadette's journey in immunology and healthcare is rooted in a genuine commitment to making a positive impact. She gained valuable insights into the pharmaceutical landscape during her time at GlaxoSmithKline in Stevenage. Further refining her skills, she pursued specialised training at the prestigious National Heart and Lung Institute, Imperial College, London. Bernadette earned her PhD in Immunology and Microbiology from the University of Newcastle, Australia, cementing her dedication to understanding complex chronic diseases. 

While an early-career researcher within Monash University's Department of Immunology, Bernadette conducted immunology research in respiratory diseases. She then transitioned into her current role as a Project Manager in the multidisciplinary PHROPHECY study at Monash University and Alfred Health. This study examines antibodies and cellular immune responses following COVID-19 vaccination in various immunocompromised cohorts, notably including individuals with PID.

Tom Keys 

Treasurer

Tom is a chartered accountant currently working for Australian Unity's wealth and capital markets platform, providing accounting support in respect of the Managed & Property Funds. 

As the volunteer treasurer for AusPIPS, Tom is committed to leveraging his financial knowledge to support the organisation's mission and help contribute to the positive impact it has on the community it serves.

Lisa Gamble

Lawyer

Lisa currently works with a corporate, commercial and construction law firm in South Australia, with her area of practice covering a broad range of commercial litigation and dispute resolution.

Lisa initially joined AusPIPS as a member of our patient advisory committee. As the parent of a child with Common Variable Immune Deficiency, she is able to provide a carer’s perspective on living with PID.

Through personal experience Lisa has become a keen advocate for improving the lives of people with PID, as well as increasing public awareness of PID and associated chronic health conditions. She has held consumer engagement roles in health research for over 7 years, including with SAHMRI and currently as Co-Chair of the Consumer Advisory Group at the National Allergy Centre of Excellence.

Lisa also has a degree in marketing and management, is a business owner and brings a broad range of skills to the Committee.