The husbands of four women have joined together to raise awareness of the need for better treatments.
Dr Frank Cheok OAM, Mark Bethwaite AM, Tony King and Daniel Goulburn OAM are calling for more attention to be paid to this rare and neglected disease.
The story of their families has a long history. Frank and his wife Mee-Na knew Tony and his wife Lyn for over 20 years – the couples played golf and travelled together. Fifteen years ago, when Mark began playing golf with Frank and Tony, he and his wife Caroline quickly became friends with the others.