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 enthusiastic team of volunteers are at our National Office in Sydney on Tuesday and Thursday 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.

President, Treasurer: Robert Twin

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

My professional background is that of 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 now look forward to also taking on the President’s role, and in conjunction with our dedicated Committee, driving further improvements for our CMT community.

Vice President: Helen Burnie

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. Noone else in our family is affected, including our parents, brother and now adult children.

When I had migraines at age 18 years, 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 long and varied career has included working in the welfare and social housing sector, 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 local council leading a team on climate change strategy, including minimizing greenhouse gas emissions, climate adaptation and effective water management.

I have spent my life avoiding focus 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 CMTAA, and I look forward to contributing.

Secretary: Lisa Moore

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 supportive in trying to link me with contacts in SA.

 Watching my son combat his daily frustrations, drove me to become active in SA to raise Awareness.  I have previously served on the committee in 2015/16.  I have also recently taken on the role of State support group coordinator in SA.  In addition in 2020 I have taken on the role of webmaster for CMT Australia.  I have now taken on the role of Secretary for CMT Australia.

.

Committee Member: Darryl Beitsch

I was a tradesman in the Printing Industry and over my career moved into middle and upper management roles within this industry. My passion has always been to keep physically fit and active. I played Rugby, was an active SLSC member where I competed in surfboat rowing. I volunteered to serve my country through military service in the Citizen Military Forces (now the Army Reserve).

When I was in my 30’s I was diagnosed with CMT which explained why I was not a fast runner and had difficulties springing into surfboats. The type I have is still to be determined. Happily married, I am encouraged that there is no evidence of CMT in our 2 children and 7 grandchildren.

Having been a past President of CMT Australia, my passion is to assist others on their CMT journey, and I’m privileged to serve on your CMT Australia committee.

Committee Member: Jillian Critchley

Hi, I’m Jillian or as my younger adult daughter describes me… the black sheep of the family being the only one not with CMT in our family. My husband Peter and both daughters, Matilda and Eleanor, have CMT 1a and have been involved with CMT Australia for many years.

One of my passions is the CMT Aussie Kids, a program my husband, Peter, and I established in 2012 just for young people with CMT. To see the changes in some of the kids after they attend the camp is amazing, and soooo satisfying. They start off shy, insecure, unsure of their abilities and leave confident and optimistic that even though some days with CMT can get you down, there is always tomorrow and it can be a better day if you want it to be. (Especially if you have like minded friends by your side… or at least on Zoom or social media).

Supporting families of kids with CMT goes hand in hand with our work with the CMT Aussie Kids Program. 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 in their local area and across Australia, New Zealand and the world. 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 dealing with these frustrations. 

In another life I am an early childhood teacher and run my own business as a Family Day Care Educator, working from home with 4 children under the age of 5 years. My musical side leads me to be 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.

Committee Member: Shaana Dekker

Hi everyone! I’ve been a member for quite a while, but I decided it was finally time to see if I could contribute to the association in a more engaged way. One of my passions is making resources accessible and relevant to our community.

I am also interested in educating medical and allied health professionals about our lived experiences of CMT, through the social model of disability.

I have CMTX and was not aware it existed until my mid-twenties. My father is affected more severely, but we were unaware it was an inherited disorder until quite late in the piece. Hence my interest in educating health professionals! My professional background includes registered nursing and law.

I currently work as a non-legal Advocate at a disability rights organisation. I spend most of my working time battling it out with the NDIA at the Administrative Appeals Tribunal and negotiating other disputes involving housing, education and discrimination. I am also a volunteer member of the Hornsby Hospital Community and Consumer Representative Committee.

In my spare time…actually, I have three small children, so I don’t really have any spare time. But if I did, I would spend it swimming or playing chess.

Committee Member: Ellen Woodbridge

Hello, My name is Ellen I have been a CMTAA 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 a to 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 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 which I run classes and share tutorials this keeps my hands active.

In my spare time I play Mum’s Taxi to my children and husbands various Karate loessons and appointments and can be found at my craft desk pottering away with husbands Guide Dog supporting me with her snoring under my desk.