Welcome to the CMTAA website
CMT or Charcot-Marie-Tooth disease, also known as Hereditary Motor and Sensory Neuropathy (HMSN), is a common but frequently undiagnosed condition. It is not a contagious disease but it is an inherited neurological disease with a 50% chance of being passed on to other generations in some families.
Research has indicated that as many as 1 in 2,500 people in Australia could have CMT. Many people who have CMT are not aware that there is an association that is dedicated to improving the quality of life of those with CMT. For additional information regarding CMT including links to local and international web sites please go to our “Links” page.
CMT Awareness Month September 2013
We are now joining with the international CMT community to promote September as CMT Awareness Month. Perhaps you may want to make contact with other people with CMT in your area to share your CMT experience. Please contact our National Office on 02 9767 5105 or by email to find out how you can be involved in CMT Awareness Month. This gives us the opportunity to spread the word about CMT and fits in well with the requests from our researchers for people with CMT to be participants in new research projects. Please see the article below.
Need For Clinical Trial Volunteers
Here is an excellent opportunity to help our researchers help us.
1. Held at the Children’s Hospital at Westmead in Sydney involving 60 children aged 6-17 years who will be randomly allocated to one of two strength training intervention groups. The investigators hope this treatment will provide a solution to weakness, disability, deformity and poor quality of life in children with CMT. Please see the PDF file below for more details or contact the National Office on
02 9767 5105 for further information. Childrens_Research_Aug_2013_.pdf
2. Held at the University of Sydney Faculty of Health Sciences, Lidcombe campus, this study is testing the effect of shoes and customized shoe inserts on balance and walking stability in adults with CMT. Please see the PDF file below for more details or contact the National Office on 02 9767 5105 for further information.
3. Held at the University of Sydney Faculty of Health Sciences, Lidcombe campus, a pilot trial study is being developed that will provide information regarding the effectiveness of Progressive Resistance Training for people with CMT. Titled “Exercise to Enhance Functionality”. This will involve 10 sedentary people with CMT Type 1 and X Linked aged 18 to 60 years.
Please contact the National Office on 02 9767 5105 for further information.
Student Assessment Volunteers
If you are interested in being a real live “CMT Patient” to assist in student assessments and are available on 1 or more of the following dates, please contact our CMTAA National Office on 9767 5105. The venue is the University of Sydney Faculty of Health Sciences, Lidcombe campus. Details are:
Monday 2nd September 1-3pm
Tuesday 10th September 10am-12pm
Parking will be organized. Participants will undergo an exercise session including instruction on how to perform relevant exercises to enhance functionality and a series of assessments.
Neuromuscular Conditions e-learning Tool is NOW AVAILABLE
We are pleased to advise that Muscular Dystrophy NSW has kindly given us their permission to have a link to their e-learning tool, “Understanding Neuromuscular Disorders”. This is comprehensive training in neuromuscular conditions for health and community care professionals who are caring for people living with these conditions. It has been funded by ADHC and covers CMT in addition to other neuromuscular conditions. Please see the link on our link section titled “Understanding Neuromuscular Disorders”.
CMT Mentioned in Federal Parliament
In the Federation Chamber of the Australian Parliament on Monday, November 26, Mr Stephen Jones, the Federal ALP member for Throsby, introduced a Private Member’s Business bringing CMT to the awareness of the Australian Parliament. See the following link for the details:
PCYC NSW: Burn Rubber Disability
The Burn Rubber Burn program is a network of accessible and affordable community based gymnasiums throughout Sydney for individuals with a physical disability including CMT. http://www.pcycnsw.org/prime_sparts_burnrubber
National TV Coverage for CMT
Congratulations to the team of the ABC TV 1 science program CATALYST in producing the segment on CMT that went to air on Thursday May 28, 2008. They did an excellent job in highlighting the challenges faced by those with CMT and those caring for them. We were greatly encouraged by the research being carried out by Dr. Joshua Burns and his team and the positive attitude of the Critchley family.
To find out more here is the link to a video of the full story and transcript: http://www.abc.net.au/catalyst/stories/2583365.htm
Children With CMT
Here is the link to the ABC Science Online web site where there is an interesting article about a family where Dad and the 2 daughters have CMT.
Genetic Testing Discussed on the SBS Insight Program
The SBS program Insight which went to air in October 2008 discussed the ethical dilemmas of Genetic testing. The Critchley family, members of our CMTAA, was invited to be involved in the discussion. All the participants were given the opportunity to share their views and first hand experience of Genetic testing. The Critchley family appears in part 2, about 16 minutes in. They will give you a CMT perspective of Genetic testing. Please click onto the following link to view the program:
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