About CMTAA

The CMT Association Australia Inc. (CMTAA) began as a Support Group in 1988, and was incorporated in 1990 as a registered charity. The motivation to establish the CMTAA Inc was to meet the need for people with CMT to communicate with each other and provide mutual encouragement. Over the years we have slowly “evolved” and are now moving forward at an unprecedented pace. Please click here to read our recently updated constitution.

It is vital that people with CMT focus upon what they CAN do.
We aim to enhance the quality of life for people with CMT. Our objects are:

1.     To obtain and distribute information related to the welfare of people with Charcot-Marie-Tooth disease.
2.     To provide assistance and support to people with Charcot-Marie-Tooth disease, their families, friends and carers.
3.     To identify and promote the development of support facilities and services for those impacted by Charcot-Marie-Tooth disease.
4.     To increase Charcot-Marie-Tooth disease awareness in the broader community, particularly amongst medical health and allied professions;
        and the abilities and requirements of people with Charcot-Marie-Tooth disease.

5.     To encourage and facilitate research into Charcot-Marie-Tooth disease, and possible cures.
6.     To establish alliances with organisations and groups with similar or complementary objectives.
7.     To assist in the establishment of similar Associations in our region.

The National 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 the CMTAA Inc, who believe they have the skills and passion to contribute to the growth and development of the CMTAA Inc, to join our management team.

Our enthusiastic team of volunteers are at our Sydney based National Office on Tuesdays and Thursdays to take your calls and respond to your emails. If the telephone is unanswered please leave a clear message and your contact number and we will return your call.


The CMTAA National Committee

President - Tony Adams

President

Hi all, I’m Tony and am very pleased  to be your CMTAA President. I have X-linked CMT (thanks mum) as does my daughter. While my CMT is a bit of a pain in the a*** I manage to get  on with it fairly well. A couple of tendon transfers and an ankle fusion and I’m as good as new - although I have now come to realise that my dream of playing for the Wallabies is probably fading. 

I am a finance professional, having spent the last 30 years or so working for large fund managers, most recently Colonial First State. I worked in the global corporate bond markets - so don’t bother asking me for stock tips ! Currently I am doing some part time consulting while I complete a Masters of Sustainability at University, but am looking forward to getting back to full time work.

As President, I hope to build upon the great foundations of the past committees and help drive the organisation along the path outlined in the strategic plan. My personal goal will be to help raise awareness of CMT within the health and allied profession communities.

 

Vice President - Christopher Meaney

I am Chris, one of three in my immediate family with CMT 1A (with another 3 in the extended family also having CMT). Thankfully, I was diagnosed at an early age, so had access to support through Westmead and Concord Hospitals, and a direction in which to move (if I had actually listened to my family and the doctors). I currently work in the NDIS Space, working as a Case Worker (and Support Coordinator) for people with and without NDIS Plans. 

I hope in the new role of Vice-President to continue to build on the work of those who have been involved previously (and continue to do so). I aim to improve the “visibility” of Charcot Marie Tooth, so that it is more commonly known rather than us having to give the same spiel over and over and over.

 

 Secretary - Anycie Berkmann

Anycie SecretaryHi fellow CMT members!  My name is Anycie Berkmann and my current position on the CMTAA committee is that of Secretary as well as being a volunteer worker in our national office.  I do not have CMT but my niece has, hence my connection with the Association.

Working with CMTAA has been very rewarding and interesting and I have met and spoken to many people with CMT and their families.  You do find that you learn a lot about people and the way they have coped and not only, in many cases dealt with their problems, but those of their children and even their grandchildren.  I think this is why CMT is so unique.

My family and grandchildren keep me busy but I do enjoy my time out from house duties to work with the Association.



Treasurer - Robert Twin

CMT Treasurer - Robert TwinI 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.

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 etc.

My CMTAA role provides 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. 


Committee Member - Jillian Critchley

CMT Aussie Kids - Jillian CritchleyHi, I'm Jillian or as my younger teenage daughter describes me...the black sheep of the family being the only one not with CMT in our house. My husband Peter and both daughters Matilda and Eleanor have CMT 1a and we have been involved with the CMTAA for many years. One of my passions is the CMT Aussie Kids Weekend, a camp 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 the camp 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 Skype or social media)

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 a choral society and 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 – Marilyn Kremmer

Marilyn KremmerMy name is Marilyn Kremmer, mother of 2 and Nanna of 7.  I come from a family of “CMTers” with my Mother, Grandfather, Uncle all having CMT 1b.  In the last 12 months my daughter and 3 nieces have also been diagnosed.  My twin sister and another sister also have this condition.

Frustrated by the lack of knowledge of Doctors I rang the CMTAA Office in Concord in 2004 and spoke to Marg Dawes asking for information.  She asked if I would like to be the Tasmanian Co-ordinator for the CMTAA.  I visited the office in Concord and had a lovely morning with Marg and Phyllis Critchley. I then put an advertisement in the local paper as well as some Doctors Surgeries.  I had 5 replies and we had our first get-together in 2005. 

Since then I have had 3 Awareness Days with guest speakers including Grace Warren, Josh Burns, Monique Ryan, Eppie Yui and Tasmanian Physiotherapists and Podiatrists.  The last one I had 2 years ago, we had to turn folk away as we had reached the capacity of 50 at our Venue! Our Support Group has now grown to 41 families. 

We continue to have social get-togethers which have proved invaluable.  We have also participated in Scott Denton’s Focus Groups and the Medication Focus Groups from Canberra University. I could not have done any of this without the support of the wonderful staff at CMTAA National Office!


Committee Member – Lisa Moore

Hi I am Lisa Moore, Mother and wife to CMTer’s.  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.