Finding cures for children's genetic diseases

News

Denim Dinner celebrates CMRI supporters, research and the families it is helping

25/Jun/2019  

She brought the room to tears at the Denim Dinner on Saturday night with her emotional story of her twins Isaac and Charlize, but Julie Gravina’s words were full of hope for the future of medical research and what it means for the health of generations of our children.


Julie was the keynote speaker at Children’s Medical Research Institute’s Denim Dinner gala fundraiser at The Star, which celebrated 60 years since CMRI’s founding and raised $296,000.




MC James Valentine opened the night by introducing Australia’s leading magician Adam Mada, accompanied by the young faces of this year’s Jeans for Genes campaign – children who live with genetic disease every day. The night ended with a live auction, music from Joel Jackson and band, Bermuda Social, and dancing – much to the delight of the kids who were allowed to stay up late!

We awarded Corporate Partner of the Year to JJ Richards – In Vitro Technologies, who have supported CMRI for more than 10 years and Philanthropic Supporter of the Year was awarded to the late Beryl Raymer whose generous giving over many decades was inspired by the cause of curing genetic causes of blindness in children.


Long-time CMRI Community Relations Manager Jennifer Philps was recognised for her hard work, dedication, warmth, personal touch and giving that imbues everything she does - receiving a Lifetime Award. She said in her acceptance speech: “This award recognizes the work of our scientists who toil every day to help sick children. They deserve my support and yours”.

CMRI’s Director, Professor Roger Reddel reflected on the institute’s achievements over 60 years-  the very many lives saved and healthier lives lived, and importantly, he said that times ahead are even more exciting. Head of CMRI’s Gene Therapy Unit Professor Ian Alexander spoke about the future and how close we are to cures for so many devastating childhood genetic diseases.




Julie Gravina told the hundreds of guests that when her twins Isaac and Charlize were diagnosed with Propionic Acidemia, and her infant son died, she felt that they were born at the wrong time in the history of medical research. Then she donated Charlize’s liver to CMRI and was shocked to see how quickly the research has progressed.

“I was so overwhelmed when I was told that CMRI were already working on gene therapy for Propionic Acidemia using Charlize’s liver cells,’’ she said. “Going into this, I really didn’t expect any research to happen for a very long time, to hear it was happening right now was simply incredible.




“I now believe that perhaps Charlize was born at the perfect time,’’ she said. “The perfect time to donate her liver to CMRI for research and the perfect time for CMRI to carry out their research.

“In the future we hope that babies born with Propionic Acidemia may be diagnosed through newborn screening then treated or even cured through a one-time gene therapy injection.

“It is my hope that these children will never have to endure the hardship my children have experienced. That their parents will never have to endure the heartache of losing a child and children will not have to go through the devastation of losing their sibling.’’