Tim Wilson (Goldstein, Liberal Party) Share this | Link to this | Hansard source

Four hundred million people globally are affected by rare genetic diseases, many of which are not well understood. In a quest for more treatment options, patients with rare diseases and their families deserve recognition for helping push the frontiers of molecular and cellular biomedicine.

The Usher 1F Collaborative, an organisation dedicated to finding a cure for Usher syndrome, is proof of the power of community led crusades for rare disease treatment. Babies with Usher syndrome type 1F are born profoundly deaf, have severe balance problems and become progressively blind throughout childhood. Currently there is no cure. The Usher 1F Collaborative recently attracted a $450,000 contribution from the Chan Zuckerberg Initiative, which is teaming up with Genetic Cures Australia, an advocacy group for Australian based research into rare diseases.

Hollie and Daniel Feller, fine Goldstein constituents I might add, founded Genetic Cures in 2016. Their mission is to support clinical trials or novel therapies that may one day help children like their son Harry, who was born with Usher syndrome eight years ago. Harry has the most awesome blue glasses. Hollie and Daniel, thank you for your tireless efforts bringing these 21st century medicines to the fore for those who need it most, and for your incredible efforts. You make us proud.