PCD Australia Foundation was formed in 2013.
We are a registered charity which is run by a committee of volunteers. We are also supported by several Respiratory doctors across Australia.
We are here to promote awareness within the medical professions and the general public of PCD and its effects.
To facilitate and promote the provision of optimal care for persons affected by Primary Ciliary Dyskinesia (PCD) and to ensure the best possible quality of life for them.
To provide information, services and activities for the welfare of those affected by PCD and their families.
We organise fund raising and administer the proceeds for the benefit of those with PCD
We represent and advocate the interests of those affected by PCD
We initiate and encourage research and study pertinent to the diagnosis, treatment management and amelioration of PCD.
Catherine Kruljac is the President and founding Member of both PCD Australia and PCD Family Support Group.
Diagnosed at 11 years old after many years of misdiagnosis. Catherine is determined for PCD clients and families to have their voices heard and make a difference.
She works in the dental industry and has an Advanced Diploma in Accounting.
Catherine's roles in representing PCD Australia are the following
- Associate Investigator REPEAT -(Reducing Exacerbations in PCD using Erdosteine and Azithromycin Therapy) Committee for the very first Randomised Controlled Trial study for Primary Ciliary Dyskinesia (PCD).
-European Lung Foundation - ELF PCD patient advisory group committee member
-Rare Connect Moderator for PCD community
She is representing PCD Australia on the consultation committee for Young Lungs Australia which is an initiative by The Lung Foundation Australia.
Her interests include travelling, Australian Rules Football, Tennis, Sailing, sewing and cooking.
Extensive experience as a legal, governance and risk executive will assist PCD Australia in transforming from an association to a company limited by guarantee. This will ensure that PCD Australia has the proper structure for growth, allowing it to deliver on its mission to assist people with PCD access to information and services to have the best possible quality of life.
My son William was born in 2018 with PCD. It was a difficult time for my family but slowly we are learning to manage William’s therapies into our daily life. William does receive great support in the children’s hospital system however we know that as PCD patients reach adulthood they can become lost in our hospital system and often are lumped in with other conditions. This was one of the reasons I became a board member and what drives me to ensure early diagnosis and a standard of care for all PCD patients no matter what their age or where they live.
Rebecca is a mum of 2 boys, Jack 4 years and William 2 years. At her 20-week neonatal scan, her baby (William) was diagnosed with a rare condition called Situs Inversus Totalis, which meant her baby’s heart and abdominal organs were mirror image – on the right side of the body. After a normal birth, William went into Neonatal Respiratory distress and was admitted into NICU for oxygen and close monitoring. At just 1 week old he was placed on a treatment plan for PCD. William continued to be in NICU for 4 weeks and went home on Oxygen for a further 2 weeks. Since then Rebecca and her husband continue to learn more about PCD and how to incorporate William’s therapies into their daily routines. It’s been a bit of a journey since William was born however they have a strong family network to support them and Rebecca is passionate about advocating for a standard of care for PCD Patients and support for their Carers.
Rebecca has a corporate background in HR management within the media communications industry and is responsible for all corporate communications on behalf of PCD Australia.
Louise was born with PCD and has lived with daily symptoms since birth. She was diagnosed with PCD in her late 20’s.
Louise has a background in legal and bookkeeping work.
Louise is pleased to join the Board to assist in providing others with PCD and their families with access to the best information, standards of care and treatment options on their journey in living with this rare, chronic disease.
Laura is a registered nurse, wife and the mother of two girls, aged 6 and 7. During her youngest daughters 20-week gestation scan, Situs Inversus Totalis was identified. She was born full term at 40 weeks but on day 5 was admitted to the neonatal intensive care unit for 10 days with query sepsis due to a wet cough, runny nose and very low oxygen saturations. Continuous respiratory symptoms, a nasal ciliary biopsy, genetic testing confirmed PCD by aged one. Today she a happy and thriving 6 year old! She has a continuous wet cough and runny nose but twice daily chest physiotherapy, airway clearance and medications allow her to live a fairly normal life- nothing holds her back! Her passion is to help raise much needed awareness and funding for research and standards of care to help children, adults and families living with PCD.