AusPIPS Inc. is overseen by a Committee of volunteers.
Jackie was diagnosed with Common Variable Immune Deficiency (CVID) in 1996, 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.
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 is a registered Justice of the Peace.She currently is a voluntary Board member for the Hunter Region Working Women’s Group (HRWWG) in Newcastle NSW which operates the Hunter Women’s Centre and Six Hats Early Learning Centre, a position she has held for the past 9 years.Karen now works full-time for the Australian Government as a Team Leader.
Kate was diagnosed with Buckley which is a Hyper Immunodeficiency disorder, which means she is highly susceptible to infections, in particular skin, lungs and ears. In 1998, her medical team decided to start her on monthly treatment of IVIg. Over the years this treatment has changed her life, improving so many areas. It has given her the opportunity to do so many things. She has been given the amazing gift of a son who is now seven, and recently graduated from her post graduate studies in counselling.
Committee member and Advisory Psychologist to AusPIPS Inc.
Bianca is a Psychologist with over 15 years clinical experience working with special needs children in the education sector. She has conducted both her Masters and PhD research in the area of stress and coping with chronic illness. Bianca's special interest in the area of Health Psychology stems in part from her own diagnosis of Crohn's Disease at the age of 19. She is currently the Psychologist at Andale School and the primary carer of her son who also suffers from chronic health issues.
Judy was a Critical Care Registered Nurse but due to becoming so unwell, she had to give up work. She was diagnosed with CVID in February 2011, after years of lung, sinus and skin infections. While regular infusions of IVIg have dramatically improved life, she now has multiple disabling auto-immune issues to deal with. She has been actively involved with volunteering in the Emergency Services, but is currently on prolonged leave due to illness. Judy is also a proud mum to two adult sons and a daughter in law. As with everyone else involved with AusPIPS Inc. Judy is passionate about seeing the health system improve, not only for people with PID, but for all Australians.
We are dedicated to
As an entity AusPIPS is dedicated to improving the lives of those living with primary immune deficiency (PID) and their carers:
- We care
- We advocate for change
- We work with other organisations to create the best outcomes for those with PID