THE CMT AUSTRALIA NATIONAL COMMITTEE

The Committee comprises people who have personal experience of CMT, either as an individual or family member.

Committee meetings are held regularly and with teleconferencing technology, the tyranny of distance is overcome.  This opens up opportunities for financial members of CMT Australia who believe they have the skills and passion to contribute to the growth and development of CMT Australia, to join our management team.

Our National Assistant is at our National Office on Wednesday 11-3pm and Friday 11 -1pm (NSW Time) to take your calls and respond to your emails. If the telephone is unanswered, please leave a message and your contact number and we will return your call.

HELEN BURNIE
President

I have an unknown type of CMT, as does my sister. We were presumably born with CMT, showing muscle weakness and slow physical development from early babyhood. No-one else in our family is affected, not our parents, brother or children.

When I had migraines at 18, I was referred to a neurologist for the first time. Uninterested in the migraines, he took interest in my legs, insisted on running an extraordinarily painful nerve conductivity test, proudly diagnosing CMT and stating that there was no treatment, no cure and predicted my early death, as all my systems would shut down and I would no longer be able to breathe. That was 45 years ago. By the way, I never had migraines again.

My career has included working in welfare and social housing, professional writing, and teaching. For the past 15 years, my focus has been on environmental sustainability. I hold a PhD in Environmental Studies and work for a large council, leading a team on climate change strategy.

I have spent my life avoiding focusing on CMT, it was just part of me, like being short. But it’s time for my attitude to change given the terrific work of CMT Australia and I look forward to contributing.

PETER CRITCHLEY
Vice President

Hello, I’m Peter and proud to be Vice President of CMT Australia.

I, and my family, have CMT1a. We have been involved in CMT Australia and CMT research for  years. I remember undergoing nerve conduction studies at Prince of Wales Hospital with my mother, aunty and cousins. Participating in research now includes my daughters.  I am Chief Investigator on research projects representing the lived experiences of CMT patients. I have participated in CMT Australia since the 1990’s and been a Public Officer for over 20 years.

My wife Jillian and I established CMT Aussie Kids in 2012. We wanted to bring together youth living with CMT to learn from and support each other.  The group now includes New Zealand participants and has strong connections with our counterpart in the UK.

Professionally, I have held a number of roles in internal audit, finance and procurement. I hold a PhD from the University of Wollongong, Faculty of Engineering.

My involvement in CMT Australia and research gives me the opportunity to contribute to the CMT community. More importantly, I have met wonderful people whom I am proud to call friends. I encourage all people living with CMT to get involved with CMT Australia, to support CMT research and be actively involved in our community.

LISA MOORE
Secretary

Hi, I am Lisa Moore, Mother and Wife to CMTers.

I became involved with CMT Australia in 2014, when my son was diagnosed, aged 3.

The National Office was very supportive when trying to link me with contacts in South Australia.

Watching my son combat his daily frustrations drove me to become active in SA to raise awareness about CMT.

I have previously served on the Committee in 2015/16 and am the State Support Group Coordinator in SA.

In 2020 I took on the role of webmaster for CMT Australia and I have recently taken on the role of Secretary for CMT Australia.

ROBERT TWIN
Treasurer

I’m Robert and am very pleased to be your CMT Australia Vice President and Treasurer.

I volunteered for the position of Treasurer at the AGM in 2009 and have fulfilled this role, along with contributing to other matters managed by your Committee, ever since. As of the 2021 AGM I have now combined this responsibility with that of President. At the 2024 AGM, I transferred to the roles of Vice President and Treasurer.

​My professional background is as a land surveyor and mapper, including geographic information system management, and through my own company I continue to work in this area on a part-time basis. I enjoy an active lifestyle which includes travel, skiing, kayaking, tennis, cycling, golf, etc.

My CMT Australia roles provide me with the opportunity to contribute for the benefit of the broad CMT community.

Our family has lived with CMT Type2 for a number of generations, and it is very pleasing to see the rapid expansion of knowledge about the disease progress through our dedicated researchers. I look forward to working with our dedicated Committee to drive further improvements for our CMT community.

JILLIAN CRITCHLEY
Committee Member

Hi, I’m Jillian, or as my younger daughter describes me… the black sheep of the family – the only one not with CMT in our family. My husband Peter and both daughters, have CMT 1a.

We have been involved with CMT Australia for many years. One of my passions is the CMT Aussie Kids, a program my husband and I established in 2012 for young people with CMT. To see the changes in some of the kids after they attend the camp is amazing, and so satisfying. They start off shy, insecure, unsure of their abilities, and leave confident and optimistic.

Supporting families of kids with CMT, finding what works, what you need and developing strategies to support your kids with CMT can be tough. I find it satisfying to provide opportunities for parents to get to know others, to chat and explore the good times and stresses, the joys and successes. I can’t personally experience the many frustrations CMT brings every day, but I can get involved to help people deal with these frustrations.

I am an early childhood teacher and run my own business. I’m involved in the Kirrawee Gang Show, a Scout and Guide stage show. Of course I do try to have some quality family time in amongst everything else.

KYLIE MCINTYRE
Committee Member

Growing up in Deniliquin my family had funny legs and tripped a lot.

This didn’t stop us doing anything. It wasn’t until the late 1980’s that the Thomas family found out there was a condition called CMT, and all those dodgy feet and knees could be attributed to this.

I was involved in everything and from my multiple visits to the Radiology department as a child decided to be become a Radiographer. This allowed me to be a part of the medical world and be very involved in research.

Sarah and Thomas were born, and both tested positive for CMT. This just made me want to be more involved in the CMT community and a part of CMT Australia.

ELLEN WOODBRIDGE
Committee Member

Hello, My name is Ellen I have been a CMT Australia member for a number of years and wanted to join to the National Committee to further educate myself and help others.

I have had CMT 2e/1f my whole life and I’m the originator of CMT in my family. I have 2 teenage children who also have CMT.

I was originally diagnosed with a motor/sensory peripheral neuropathy, but in later years was treated as CMT despite not testing to any known types. I got the gene diagnosis in my 30’s along with my children. It was a relief to finally know we existed in the CMT world despite being one of the quite rare types.

In my working life, I have worked in the health care field and in customer service, as well as running my own cardmaking business where I run classes and share tutorials. This keeps my hands active.

In my spare time I play Mum’s taxi to my children and husband’s various Karate lessons and appointments, and can be found at my craft desk pottering away with husband’s Guide Dog supporting me by snoring under my desk.

VICTOR CHRISTOU
Committee Member

Hi, I’m Vic and have been involved with the CMT WA community since about 2005 and am also one of the WA committee team members here in Perth together with James, Fran, Sophie and Jenny. It’s great to be able to support and interact with fellow CMT affected people and families.
I have CMT type 1B, am married with two boys. They are unaffected as we decided to use genetic screening. I work full time as a Chemical Engineer.
My CMT was relatively late onset, I was first diagnosed with CMT when I was 30. In my younger years, before being physically affected, I was very active playing state volleyball, soccer, Macedonian folkloric dancing and playing trumpet in a 60-piece concert band. I still remain active as possible and have adapted as my CMT has progressed. It’s hard sometimes to keep motivated and active and that’s Ok, but the benefits are well worth it. My favourite exercise activity these days is riding my recumbent bike. I very much look forward to contributing in my capacity as a CMT Australia National committee member.

RACHEL CRICHTON
Committee Member

Hello, My name is Rachel, I have CMT 1A. I was diagnosed in 1990 when CMT was relatively unknown in terms of treatment and support. Knowing I had it but not knowing what parts of my life it was impacting always made me feel different and I wasn’t sure why.

I have 2 beautiful children, 1 has also been diagnosed with CMT. Watching her struggle and wanting to do more to support her and others like her is what prompted me to join the committee. We are both on an NDIS plan and are very grateful for the support we receive from our LAC and our therapists.

I am a teacher now but previously worked in hotels for over 20 years. I have always been active and continue to try to be (as much as physically possible). My daughter enjoys karate and benefits from a range of therapies in the hope that we prolong her mobility for as long as possible.

My goal now is to raise awareness of CMT to ensure that future generations have access to as much support as possible.