Bess Petronijevic

Bess is an Australian mother, disability advocate and passionate voice for families living with Pelizeaus–Merzbacher disease (PMD). Her son Alex lives with PMD caused by a PLP1 duplication, inspiring Bess’s commitment to improving awareness, connection and support for families navigating this rare and complex condition. Drawing on her lived experience advocating across health, education and disability systems, Bess works to ensure children with PMD and their families are seen, heard and meaningfully included in research, care and community.