It began with the vision of three families:
Robert and Adriana Gardos, Helen Coolican/Stern and Ian and Judi Cornell.
It was Robert and his wife, Adriana’s, initiative that planted the seed for PKD Australia in 2011. Upon learning that their friends, the Stern family had this genetic kidney condition they approached Westmead Hospital Renal Department to see what could be done to find a cure for PKD. Their support of a PhD candidate’s research into PKD galvanised their thinking about how research could be extended to multiple locations throughout Australia. This, in turn, inspired the Foundation’s goals, enabled the development of a national organisation and set its’ vision in motion.
PKD has been in the Stern family for five generations and affects all four of Helen’s children. Helen’s relationship with PKD began more than 40 years ago when her late husband, Michael and his father Otto were diagnosed a few weeks apart. Having long dreamed of the possibility of a cure for PKD, Helen wondered how soon and where the breakthrough to a cure would happen. The powers of creativity and imagination have been an essential part of Helen’s life as an English, History and Creative Writing teacher, mother to Michael junior, Emily, Natalie and Sam and wife to Michael senior. It is Helen’s hope, that creative and innovative practice combined with scientific knowledge will drive medical researchers and scientists to find a cure for PKD very soon.
Ian and Judi had a baby boy 25 years ago who was diagnosed with ARPKD during the pregnancy and the expectations of his survival were very slim. Much to the surprise of everyone including the medical profession, Michael has continued to defy the odds and as he grew so did their determination that a cure needed to be found for PKD. Because ARPKD is a recessive disorder, there was no sign of it in earlier generations. ARPKD children need continuous treatment from birth. Michael received a living donor transplant from Judi in November 2018. Michael and his sister Melanie are both Ambassadors for PKD Australia.
Since launching 4 years ago, PKD Australia has connected with clinicians and researchers and held patient information seminars in many major cities. PKD Australia is bringing the community of PKD families together across the country for support and education and to advocate for the many families that are affected by this disease that currently has no cure. PKD Australia raises money to fund breakthrough research into a cure for PKD.
The three families all work on a total volunteer basis including all travel costs.
We are all united in the fight against PKD.