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.
Jackie was diagnosed with Common Variable Immune Deficiency (CVID) in 2006, along with Bronchiectasis which has resulted from going undiagnosed with CVID for 16 years. In the last 10 years since diagnosis, Jackie has been heavily involved in the PID community and she is passionate about seeing the quality of life improving for those with PID, in Australia.
Jackie has been volunteering for over thirty 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 2011-2012, she has worked with the ARCBS, as a volunteer Blood bank Ambassador for a number of years and also has CPE (Clinical Pastoral Education) level 1.
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. After she was unable to go out to work, Jackie was 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 has IVIg (Immunoglobulin infusions) every 21 days, which have given her quality of life back and she also follows a strict physiotherapy regime, which includes swimming weekdays, year round. She is dedicated to also improving the lives of others in Australia, living with PID.
In December 2017, Jackie started doing SCIg - doing her own infusions weekly at home by herself. Jackie can’t remember when she last felt as well and is resolved to ensure others who qualify will also be able to choose to do SCIg.
Emily is currently a postdoc in the field of Primary Immunodeficiency (PID) 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. She hopes that in the future her research will contribute to better diagnostic, prognostic and therapeutic strategies for people with PID.
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).
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.
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.
James is currently a lawyer in a full service law firm with a practice focus in workplace relations. He developed a strong interest in health and the healthcare system in a previous role that heavily interacted with metropolitan, regional and rural health services and community health centres.
James’ experience and problem solving ability will facilitate the committee in its function.
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 is also a Community Board member for a major medical research organization, focusing on women and children’s health.
Lisa currently works as a lawyer in private practice specialising in commercial litigation. She also has a degree in marketing and management, is a business owner and brings a broad range of skills to the Committee.
Karen has over 25 years of experience in the not for profit sector specialising in Marketing and Business Management as well as being a successful Event Manager and Fundraiser for both regional and national organisations in the health and disabilities sectors.
Her interest in PID started with her contract employment in 2012 as the General Manager of IDFA, it was during this time her grandson was diagnosed with T cell immune deficiency and Hereditary Spherocytosis (HS). It was through personal experience she developed a greater understanding PID and the difficulties faced by people with PID and the impact it has on their families.
Karen has studied business management, fundraising, marketing and has over 10 years’ experience working in the disability sector. She has previous experience as a Board member for the Hunter Region Working Women’s Group (HRWWG) in Newcastle NSW. The voluntary Board operates the Hunter Women’s Centre and Six Hats Early Learning Centre, a position she held for 11 years. Karen now works full-time for the Australian Government as a Project Officer.