A familiar face and voice will take centre stage the Capel Vale Conquer Cystic Fibrosis Grand Ball this Saturday, May 20.
MAFS contestant and prominent cystic fibrosis advocate Lyndall Grace will be the keynote speaker and will also sing in front of more than 840 guests at the Crown Grand Ballroom.
The event has had a three-year hiatus due to Covid but the Cystic Fibrosis community will celebrate its return which coincides with 20 years of fundraising by the volunteer team.
“Our grand ball will be a chance to unite to celebrate the success of our charity and the many advancements in research over the past 20 years,” CCF Chair Wendy Endebrock-Brown said. “However, this will also be bittersweet reunion because our community has experienced ongoing heartbreak in recent years with the deaths of previous keynote speakers, advocates and friends Jayde Kinane, Adam D’Aloia and Coen Ashton.
“These beautiful young people died far too soon because of this disease and we will never stop supporting research while Cystic Fibrosis continues to claim young lives and devastate families.” Mrs Endebrock-Brown was one of the founding parents of children with CF who started fundraising 20 years ago and set up the charity.
Lyndall said she jumped at the opportunity to share her story in the hope of boosting research funds. “The beauty of Conquer Cystic Fibrosis is that it is 100 per cent volunteer run so all the funds go to research to help extend lives like mine,” she said. “If it wasn’t for medical breakthroughs, there is no chance I’d be standing here today.
“I grew up believing I’d die before my 26th birthday but I’ve been well cared for by the WA CF specialists here and I recently gained access to the revolutionary medicine Trikafta. “I am not only alive because of it but I now have a tangible hope of growing old. “However, despite the advances, we still have a long way to go and the deaths of friends with CF are tragic reminders of why we have to keep supporting the research into the vast complications of this disease. “The death of my beautiful friend Jayde Kinane at just 21 years of age should never have happened so for her and others, I will do all I can to keep having our community’s voice heard.
“When I take to the stage to sing and speak at the ball, it’s not just about my personal battle with this disease but all those alongside me and all those who come after me.”
In 2017, Lyndall opened the event singing a touching rendition of ‘Like I’m Going to Lose You’ by Meghan Trainor. Funds raised by CCF go to the Telethon Kids Institute, Institute of Respiratory Health and Australian Cystic Fibrosis Research Trust. The charity has also purchased a $280,000 machine for Fiona Stanley Hospital to make lung transplants safer.