About MEF2C Foundation Australia
MEF2C Foundation Australia is dedicated to raising awareness and supporting research for MEF2C Haploinsufficiency Syndrome (MCHS), a rare genetic disorder that affects the development and function of the brain, and other systems in the body.
The Foundation was started by a group of Brisbane-based parents who, when they received a diagnosis for their child were confused, and did not have the information and support readily available to them to understand MCHS. The Foundation aims to be the first port-of-call for parents and carers of newly diagnosed loved ones, and to help with first steps in what is an overwhelming and difficult time.
Our Mission
The Foundation’s mission is to improve outcomes for individuals with MCHS and their families by increasing awareness of the disorder, supporting families through shared knowledge and community building, and supporting research into MCHS.
If you would like to access a full statement of our charitable purposes, you can view our constitution on the Australia Charities and Not-For-Profits Commission (ACNC) website here.
Our Board
The Foundation's Board of Directors is made up of parents of children with MCHS who are dedicated to making a difference in the lives of those affected by MCHS. As we grow our organisation we will establish a Research Advisory Board to help us direct our energy and resources in the most effective and coordinated way, in partnership with global MEF2C organisations.
MEF2C Foundation Australia Current Directors
Claire Bothwell
Jayne McLachlan
Sean Rafferty
Dean Borg