Tuesday, 15 November 2022
Reception for Cystic Fibrosis
Rod and I as joint patrons warmly welcome you all to Government House to mark the 50th anniversary of Cystic Fibrosis SA.
At last after two years of disruption due to the pandemic we can come together and celebrate the incredible work that Cystic Fibrosis SA does in our community.
Recently, we gathered in the grounds of Government House to honour, in a deeply moving ceremony, those who battled cystic fibrosis and are no longer with us.
It was a poignant time for private reflection and remembrance, yet there was also a sense of solace in that there is hope for the future.
At the ceremony, Rod and I were touched by the compassion and dedication of members of the Cystic Fibrosis SA family.
And just like all families, you look out for each other, you comfort, you advocate, you share experiences and provide much needed counsel and information. That bond gives you strength.
Because you know. Because you care.
At the core of the Cystic Fibrosis family are the mothers, fathers, grandparents, siblings and other family members who are involved in the unrelenting responsibility of care for a family member living with cystic fibrosis.
Thankfully behind them are researchers and clinical teams from the Royal Adelaide and Women’s and Children’s Hospitals, family members who have been involved with Cystic Fibrosis SA since inception, generous sponsors and supporters.
It is wonderful that you can all come together at Government House.
Rod and I particularly thank the families who reach out and generously give the magic gift of their time to help others through the labyrinth of available treatments and support. Their experience helps make it easier for others.
Statistics tell one important aspect of the story of your work.
In South Australia there are currently 165 children and adolescents and 180 adults living with Cystic Fibrosis. There are also 34 adults with Cystic Fibrosis who are being cared for by the Transplant team at the Royal Adelaide Hospital.
The other aspect is the story of progress.
When Cystic Fibrosis SA was incorporated in 1970 as a support group for parents of children with Cystic Fibrosis, parents were told at that time that their child was facing a life expectancy of eight to 10 years.
Rod and I can only imagine the anguish that that news would have brought.
Since then, there have been improvements in patient care and management, a more developed scientific understanding of disease causes and progression, and more recently the affordable availability of modular drug therapies such as Trikaftor.
And that brings hope.
Hope of increased longevity for people living with cystic fibrosis.
Hope of a better quality of life.
So much so that now a median survival rate of 53 years has been reported, and this is expected to increase in coming years.
In fact, now there are more adults than children living with Cystic Fibrosis.
Rod and I thank everyone involved in Cystic Fibrosis SA past and present for being fighters and advocates for your community.
Because of you people can get the right information, medical treatment, and essential emotional, social and financial support.
While there is currently no cure for Cystic Fibrosis, passionate people are determined that one day there could be.
Thank you to everyone here for embracing that tomorrow.