Published Friday, 7 October 2022
A Grandparent's Heavy Load
Yvette Winter, CA Board Member
In the early days of the Women’s and Children’s Hospital, for five years I held the role of Business Manager for the Surgical Division. I worked alongside Professor David who had been appointed as the Surgical Division’s Chief of Surgery. It was there that I learned about the amazing work of the Australian Craniofacial Unit where the Professor was also Head of that department.
Never did it cross my mind that later in my life, I would be guiding my own daughter to seek out Professor David, who became the co-ordinator for the surgical care of my grand-daughter’s congenital condition.
We grandparents carry a doubly heavy load supporting the shock and trauma our children experience when they as parents are given an unfavourable diagnosis for their own child and learn how slow and long the journey ahead will be.
Then there is the worry we have about the impact this will have for our grandchild’s future. If ever our ability to be stoic is tested, it is in this dual support role. I was fortunate to have worked in the healthcare system and knew how best to navigate it and seek out help.
Today, my lovely 16-year-old granddaughter, Lexi, who has one more operation to complete the needed surgical interventions, is a most beautiful and resilient human being. Due to other co-morbidities, Lexi will require specialist medical care for the remainder of her life, but she takes this knowledge in her stride. I saw this attribute in craniofacial children well before she was born. They are wise old souls, incredibly perceptive and tolerant of the stressful interventions they must endure.
Our children are precious and provide hope for the future of this world. We nurture and guard them through their development into adulthood. Our hearts especially go out to those who have to learn to live with disfigurement. This caring does not diminish with the transition into adulthood, or indeed for adults suffering trauma and the effects of disease-causing disfigurements. Craniofacial care extends from cradle to the grave and our Foundation’s work is about restoring hope and dignity.
I would like to acknowledge the benevolence shown by donors to support our input aimed at mitigating the physical and mental trauma that craniofacial patients endure. It is making a real difference. Speaking as a Board Member we understand that donating has proven much tougher during the Covid disruption. So to those who have continued to support our Foundation, be it financially or in kind, we extend our most sincere gratitude. To those who have the opportunity in the future to share a little more of that benevolence, we welcome your assistance.
I consider it an honour, and I am proud to volunteer a little of my managerial brain and social heart as a Board member to keep the vision alive. As a grandparent, I too am equally grateful for the compassion and care that so many health professionals provide. So too, I recognise your input as donors and advocates to our cause, valuing it enormously and preciously protecting it at Board level to assure your contribution is put to best use. To fellow grandparents, you too are making a significant difference by providing invaluable support to your children and grandchildren in such difficult circumstances. As hard as it can be at times, keep up the excellent work.
Annual General Meeting 2022
Craniofacial Australia's Annual General Meeting will take place on Wednesday the 16th of November at the David Roche Foundation, 241 Melbourne Street, North Adelaide SA 5006, starting at 6PM.
Royal Adelaide Show
In early September you might have seen us in Jubilee Hall at the Royal Adelaide Show! It was an exciting and busy week where we had the opportunity to meet many community members who have been affected by a craniofacial condition, whether directly or indirectly. We would like to extend our heartfelt thanks to the community members who volunteered at our stall, and to the members of the Refined Real Estate team who volunteered their time and sales expertise to help out.
Congratulations to our raffle winners!
At the Show we ran a raffle for gift baskets filled with goodies, including lovely handmade quilts, Lego sets donated to us by Variety, and lollies donated by Metropolitan Fresh. Congratulations to the six prize winners, including Jess, Kate, Glenn, Natalie, Jacob and Kathy.
Recent Events
Come Dine with Me - Guess Who's Coming to Dinner?
‘Come Dine with Me – Guess Who’s Coming to Dinner?’ was an intimate but fabulous event. Host Sue Redman interviewed her guest Professor David AC, who spoke about how he became interested in craniofacial surgery and the long journey that began in Australia, taking him to Paul Tessier in France, the father of craniofacial surgery, where he was taught the fundamentals of the multi-disciplinary approach to successful complex surgery. He honed his skills in the UK and finally returned to Australia where he established the world-famous Australian Craniofacial Unit here in Adelaide. Everyone was enthralled in his story and would have happily skipped dinner to hear more. One person said: 'such an inspiring person'.
Golden Gavel Auction
Craniofacial Australia was the chosen charity at The Society of Auctioneers and Appraisers (SA) “Golden Gavel” event, held in August. Two of South Australia’s finest auctioneers went head to head in a bidding war that raised $2,700. We are grateful for the generosity and support of both auctioneers and bidders at this incredible event. Thanks also to Dr Ben Grave for his donation of a magnificent canvas and to Fili Jewellery Adelaide Arcade for their donation of an exquisite pearl necklace valued at $1,200.
Lumary City-Bay Fun Run
We were thrilled to be at the City-Bay Fun Run in September. Thank you to Refined Real Estate for providing free ice-block refreshments and for their ongoing support. The energy, smiles and commitment of Adelaide’s walkers and runners was truly inspiring! Barbara’s Team “NBN”, represented by board member Nicholas Pyne, herself, and friend Nicholas Crouch, kept great pace and finished in two hours! Bravo.
Research Update
Prof Stan Gronthos and his team at the University of Adelaide have also continued their work in identifying chemical inhibitors that suppress bone formation in cranial suture stem cells. Their tests have identified a protein (C-ROS-1) that is highly active in the cranial bone cells of patients with the “Twist-1” genetic defect involved in the development of craniosynostosis or pre-fusion of the cranial sutures. By using an inhibitor drug, Crizotnib, they found that it temporarily halted the pre-fusion of those sutures in mice with a genetic defect that is also present in humans with Saethre-Chotzen Syndrome.
Experiments are currently underway to determine if a single dose or multiple doses of the inhibitor drug are capable of preventing craniosynostosis in mice, with the potential for the drug to be developed for humans as a safer and less invasive treatment for craniosynostosis than surgery.