The CMT Australia Management Team wish you a safe and refreshing Christmas season.
The CMT Australia Management Team wish you a safe and refreshing Christmas season.
I was leaving a café recently when I noticed a man who had the characteristic “CMT gait”. Curiosity emboldened me to ask the question “Excuse me, I don’t mean to intrude, but do you have a neurological condition in your legs”?
His response was “yes” and he added that it was a condition called CMT. I responded that I am also a member of the “CMT family”. He then invited me to sit down for a chat. He did not know about the CMTAA and with the exception of drop foot supports on both of his shoes he didn’t have any CMT management strategies.
He shared when he was diagnosed and that his brother had also been diagnosed with CMT. He also told me how he and his wife had made accommodation choices that assisted in prolonging mobility without undue risk. I mentioned there are numerous management strategies and aids that can enhance daily quality of life. These were discussed with him and I explained what I was currently using and how they were very beneficial and worked for me. Aids such as under-toe supports, special orthotics, shoes for maximum support and stability and regular personalised exercises from an Exercise Physiologist. I gave him the CMTAA website details and also the name of a podiatrist who had a practical understanding of CMT and whom I had found very helpful.
He had a positive attitude and it was a mutually encouraging experience.
Under the leadership of world-class CMT clinicians including Professor Joshua Burns from Australia, the CMTA USA sponsored a workshop and brought together physical and occupational therapists from the CMTA USA’s Centers of Excellence to collaborate on a guide to help you and your therapists better understand and manage your CMT. They have created this comprehensive guide for you.
This first-of-its-kind publication outlines the assessment and care of people with CMT. As CMT manifests so differently from person to person, this guide, based on research, experience and patient input, will optimize collaboration between physical and/or occupational therapists and patients, helping ensure you get the best possible care for your specific needs.
The goal of CMT Australia is to provide each and every one of you with the vital information you need to lead the best lives possible with CMT.
Please click here to download your copy now, and send it along to your physical and/or occupational therapist.
Soon to be in print (details on receiving the printed version coming soon), this invaluable document will empower people with CMT and their health care professionals to safely make educated decisions regarding a rehabilitative plan of action to maintain function and quality of life.
We all know how much of a mouthful 'Charcot Marie Tooth Association of Australia' can be. Our disease name can be a bit tricky to remember and pronounce. We were finding people who didn't even know we existed, and who were missing out on the many benefits of membership because they simply didn't know where to look. The name has sometimes been difficult to relate to and understand. So the committee decided to do something about it and ‘CMT Australia’ was born. We are the same organisation, same support, same resources, same care. Just an alternate name. Our logo and branding will not change. We are not throwing out the old name. It stays. But now we have an alternative to the mouthful of doctor’s names , something that recognises our origins in Australia, and gives a nod to the acronym CMT.
You’ll find us using the term more and more as we all get used to it. However, be assured that nothing has changed. There is still the same passion to serve our members through support, raise funds for vital research into CMT, disseminate information to our members, and allied and medical health professionals, and provide programs that give kids an opportunity to learn about their CMT.
The Special General Meeting is being held to adopt a new Constitution for the Association.
Please click here to view the AGM - SGM Agenda, Nomination Form and Proxy Form
Please click here to view the current constitution with the marked up changes.
Please click here to view the final amended constitution.
Please click here to view the CMTAA Objects document
29th ANNUAL GENERAL MEETING AND SGM
Time: 1.00pm Saturday, October 20th, 2018
Venue: ANZAC Research Institute,
Concord Hospital, Concord, NSW. (Entrance through Gate 3)
We are conducting testing sessions throughout the country to evaluate which Para-sports individuals may be eligible for, in addition to which
Para-sports might be best suited depending on the type and level of impairment, history in sport and a range of other considerations.
Testing will be conducted in the following cities over the coming
* Sydney, Sunday 12th August
* Gold Coast, Saturday 18th August
* Brisbane, Sunday 19th August
* Perth, Sunday 9th September
* Darwin, Sunday 23rd September
* Hobart, Sunday 7th October
* Melbourne, Sunday 21st October
* Canberra, Sunday 18th November
* Adelaide, Sunday 9th December
WHERE TO REGISTER
Registration is available at the following link
WHAT IF YOU CAN’T MAKE IT TO A TESTING DAY?
We still want to hear from those interested in a Para-sport pathway.
One of the options on the registration link considers this and enables
individuals to upload impairment information and footage participating
in an activity and we will follow up with you independent of the
Para-sport testing days.
WHO’S ELIGIBLE TO PARTICIPATE?
Individuals with a physical impairment, vision impairment or mild
The CMTAA is pleased to provide the following high level outcomes from its recent survey of member satisfaction. Our survey attracted over 130 responses which we feel was an extremely strong sign of the engagement of our members in this process. To all our members we say thank you.
We are pleased to find that the overwhelming majority of members appear happy with their membership and the activities of their association.
The first area our survey focused on was why our members joined and what keeps them renewing each year. The key responses were:
We then asked about our Coffee and Chat Sessions. There seems to be good support for these but a clear message was that CMTAA improve its communication of upcoming Chat sessions. The CMTAA will be working on improving our communication in this area. A second theme was a need for more variety in location of these chats in more regional areas. With a widely-spread membership across Australia this is a little more challenging but we would be very happy to help facilitate more regional catch-ups. Anyone who is able to arrange such a catch up in their local area is welcome to call Anycie in our National Office who can help put you in contact with other local members. We are always looking for people willing to perform the role of regional coordinators, which is not a big job, and would be very happy to get more volunteers in this regard.
Our next series of questions were about our Website, Newsletter and Facebook pages. At this stage it is clear that our web site is used by members more often than our Facebook page although Facebook is increasing in popularity. Those members using our Facebook page appear to be using it primarily for social interaction with other CMT users. Members generally called for more feature articles from Allied Health Practitioners and on services for people with CMT for both our web page and our newsletter. There was also demand for more news on what is happening in the CMT community outside Australia. Your committee will be actively looking to fulfil this requirement of our membership.
Our Regional Support groups have moderate support from our members. There was a call for more meetings and more volunteers to arrange these meetings.
In terms of the strategic direction of the CMTAA our members strongly supported us ensuring that we focus on the following areas:
Ideas regarding Fundraising were broad but included more active lobbying of governments for funding and promoting more workplace giving.
The overwhelming majority of respondents indicated a willingness to being invited to participate in CMT research.
The primary group other than the CMTAA that members look to for information about CMT was the Muscular Dystrophy Australia. The CMTAA will investigate building stronger links with this organisation.
Again the CMTAA thanks its membership for the high level of support for this survey and is pleased that much of the feedback from members aligns with our existing Strategic Plan that we continue to work to implement.
Further I would like to thank Robert Twin and Chris Brown for their extensive effort in the preparation of this survey and collation and reporting on the results. Thanks very much guys
In 2015 a research project was produced by The University of Sydney for the Charcot Marie Tooth Association of Australia Inc. under the Chronic Disease Prevention and Service Improvement Fund, an Australian government initiate administered by the Department of Health and Ageing.
The project was titled “Reducing the Health Burden of Charcot Marie Tooth in Australia”.
This is the first time a comprehensive project of this nature has been undertaken in Australia.
Many of our CMTAA members and others in our CMT Family and those caring for them contributed valuable information through a nation wide survey and nation wide focus groups. A heart felt "THANK YOU" to all who contributed. Your information was collated by Dr. Scott Denton and his team to produce the comprehensive 105 page report that has been submitted to the Australian Government. We have received approval to make this report available to our "CMT Family", their carers, researchers and others who may be interested.
To view this report, please click onto the link below:
Please click onto the link below to view the CMTAA Strategic Plan.
Researchers and scientists around Australia frequently contact the Charcot-Marie-Tooth Association (CMTAA) for desperately needed funds to assist them in finding a cure for Charcot-Marie-Tooth disease or what it is more commonly known as CMT.
CMT is also known by another name, Hereditary Motor and Sensory Neuropathy (HMSN) of which over 84 types have been identified by scientists worldwide.
We have excellent scientists in Australia working hard to find a cure but funding is a constant problem. CMTAA assists by funding through donations received for what it carefully considers to be important research. Unfortunately, there have never been enough funds available to assist in the Grant Applications we receive. We frequently have to turn back requests due to lack of research funds we have available.
This is why the Association is now appealing for our members (and non- members) to take on the role of fund raising for CMT research. If you have spare time, you could organise a fund raising event such as an Afternoon Tea, hold raffles or contact companies who may be willing to donate to CMT research. We also have a Sustaining Partnership Scheme where a company can advertise on our website and in our newsletter for a specific fee. We need someone to coordinate and manage this specific work. The National Office can assist of course so you would not be alone in this role.
If you feel you can help in a voluntary capacity in this project please contact our National Office on:
02 - 9767 5105 or email: firstname.lastname@example.org
If the office is unattended, please leave your name and contact number and we will get back to you.
We were very privileged to have members of our "CMT UK Family" join in all the fun.
Here is the link to all the action:
This link can also be found under "Current Activities" and then "Youth Activities".
Please note that as a financial member of the CMTAA, the seminar presentations can be viewed through our website. Please login to our website, click onto "Current Activities" and then onto "Previous Seminar Presentations" and enjoy the informative presentations.
If you are a financial member and have not already registered on our website to be able to access these, please follow the simple steps below:
It is vital that the email address that you enter is correct as this will be your Username.
YOUR MEMBERSHIP WILL BE ACTIVATED FOR WEBSITE LOGIN PERMISSION ONCE WE CONFIRM THROUGH OUR RECORDS THAT YOU ARE A CURRENT FINANCIAL MEMBER OR WE HAVE RECEIVED PAYMENT FOR YOUR MEMBERSHIP. YOU WILL BE NOTIFIED BY EMAIL WHEN THE ACTIVATION PROCESS HAS BEEN COMPLETED.
Dr. Scott Denton and his team, supported by the CMTAA Inc., have produced this outstanding 16pp booklet. This is a source of great encouragement for our "CMT Family" and those caring for them.
The booklet includes easy to read and understand topics such as:
Please click onto the link below to view the PDF version of this informative booklet.
Should you require a hard copy, please contact our National Office on 02 9767 5105.
The cost is $5 that covers postage and handling.
The CMTAA is indeed privileged to be a part of the International CMT community.
Moving forward together to promote CMT awareness.
Please click onto the link below to view the video.
Please click on the PDF link below for all the details.
Financial members of the CMTAA can view all the speaker presentations from the 2016 Brisbane National Awareness Day.
Simply login to the CMTAA wesite, on the Home page click onto Current Activities and in the drop down selection click onto Previous Seminar Presentations.
Please note that the 2012 and 2013 Awareness Day Seminars are also available to non-members of the CMTAA.
To read more about this exciting development and how to go about downloading it, please click onto the link below:
Please click onto the link below for more information and to participate in the survey.
Please click onto the link below for all the details.
Please click on the link below.
His citation reads: "for eminent service to medicine, particularly to the discipline of paediatric neurology, through pioneering efforts in neuromuscular
research, to a range of medical professional organisations at the national and international level, and as an author and educator."
Congratulations on this well deserved award.
Like other members of the community, people with CMT are treated with medications for a variety of chronic diseases. Some medications have the potential to be neurotoxic, however, for many of these medications the impact of these effects in people with CMT is unknown or unclear.
You are invited to participate in a research project being conducted by the Discilpine of Pharmacy at the University of Canberra. Initially this will be through contibuting your important feedback regarding medication through your participation in a brief online survey.
Please click onto the link below:
Please click onto the Medical Professionals link on the home page and then in the drop down box click onto Clinical Practice Guidelines.
On the home page please click onto "Current Activities" and on the drop down box, click onto "Previous Seminar Presentations".
Alternatively, both members and non-members can purchase previous seminar DVDs. Just click onto "Support Us" and on the drop down box, click onto "DVD Sales".
More Good News
A BIG THANK YOU to those who also participated in the very successful Focus Groups that were held throughout Australia. Dr. Denton is now very busy collating the important data from the survey and the Focus Groups.
A fabulous time enjoyed by all who attended.
Emeritus Professor Robert Ouvrier has been a long standing friend and supporter of our CMTAA. Back in the early 90's when we were then known as the CMT Support Group, at our second public meeting, he gave a very informative talk about CMT at the Woodstock Community Centre in Burwood, NSW. We were all impressed at the time by his knowledge of CMT.
Professor Robert Ouvrier is a paediatrician, specialising in the field of paediatric neurology. Professor Ouvrier is internationally renowned as a leader in paediatric neurology, evidenced by his achievements as Emeritus Professor of Paediatric Neurology (Sydney University) and President of the International Child Neurology Association, and the key role he played in establishing and leading the Institute for Neuromuscular Research at the Children's Hospital Westmead, Sydney.
Dr. Amy Sman is currently conducting a research trial investigating strength training for children with CMT (ages 6 to 17 years). The current venues for the study are the Children’s Hospital Westmead and also at Sydney Children’s Hospital Randwick.
This trial is now being extended to regional NSW areas to include Newcastle, Orange, Canberra, the Illawarra and areas between these locations and Sydney. To action this extension of the trial, it is vital that a minimum of 4 children can attend one location in one of these areas to enable Amy and her team to visit them!
Amy has written to following overview:
Why are we doing this
What is in it for the participants
When we have several families in a particular location, we can perform the exercises as a group (saving time for both parties) provided that all participating children can be seen at one home. This could really help compliance to the exercises for the kids when they are in similar company and will make it more fun for them. Parents could rotate for example if there are 5 families, it can be at one person's home one fortnight and in another one the next fortnight.
The register your interest and to find out more information please contact:
Dr. Amy Sman | Postdoctoral Research Fellow | Physiotherapist
T +61 2 9845 3004 | T +61 2 9351 9011 (Tue)
E email@example.com | E firstname.lastname@example.org
Kevin has now completed the production of his full colour glossy coffee table book. A percentage of the profits raised from the sale of the book will be donated to our CMTAA.
Thank you Kev for increasing the awareness of CMT.
Please follow the link below for information on how to purchase a copy of this very impressive book. "Walk with Me" captures the magnificent scenery that Kev and his colleagues enjoyed during their trek to Mount Everest base camp.
Children's Neurosciences Centre, The Royal Children's Hospital, is seeking children and adolescents aged 4 to 18 years of age who are able to walkat least 75 metres and have a diagnosis of Duchenne or Becker muscular dystrophy (DMD/BMD) or Charcot Marie Tooth disease (CMT). The study will be investigating footware, fatigue and falls in paediatric neuromuscular disease.
See the PDF below for additional information and/or to participate please contact Rachel Kennedy on 03 9345 4287.
Currently 23 children with CMT aged 6 - 17 years have been recruited for a new research study investigating strength training. The 2 year trial will investigate if foot and ankle strength training is an effective and safe treatment to improve strength, walking ability and quality of life in children affected by CMT aged 6 - 17 years. Another 37 children still need to be recruited for this research study. Please look over the PDF below for more details. The venue is the Children's Hospital at Westmead as well as a home-based training programme with a Physiotherapist. See the PDF below for additional information and/or to participate please contact Amy Sman on 02 9845 3004 or the CMTAA National Office on 02 9767 5105.
The opportunity for adults is being involved in a research study investigating the benefits of resistance training for people aged 18 - 60 years with CMT Type 1 and Type X. The venue is the Cumberland Campus, University of Sydney, Lidcombe. Please look over the PDF below for more details. See the PDF below for additional information and/or to participate please contact Ms Nidhi Saigal on 02 9351 9138 or the CMTAA National Office on 02 9767 5105.
We have a range of great DVD's available to purchase online..
1. CMTAA Seminar DVD - 2013
Members of the CMTAA were asked to contribute to the ABC’s Health and WellBeing program that outlines the issues that should be considered before contemplating Genetic Testing.
Please click onto the following link:
See atttached PDF from the Sydney Morning Herald (Thursday September 11, 2008)
We studied the timing and progression of foot and ankle changes in 81 children with genetically confirmed Charcot-Marie-Tooth disease type 1A (CMT1A) and determined their impact on motor function and walking ability.
Our CMT research team headed by Professor Garth Nicholson and A/Professor Marina Kennerson at the Northcott Neuroscience Laboratory, ANZAC Research Institute in Sydney has recruited CMT families for over twenty years. These families have been identified through our close association with neurogenetic clinics Australia wide and through our role as the main referral centre for DNA diagnostic testing for CMT. Our laboratory has one of the largest CMT patient family databases in the world.
CMT Family Recruitment
There are over 40 genes that have been identified for CMT. Our laboratory has discovered some and also made important contributions through overseas collaborations for other CMTgene discoveries. With new government research funding awarded to Professor Nicholson and A/Professor Kennerson our research goal of identifying more CMT genes using family studies and state-of-the-art DNA technologies will continue. Through identifying these genes we will gain an understanding of the biological basis of CMT and the genes that cause the premature death of motor and sensory neurons. This understanding is a prerequisite to the effective diagnosis, treatment and prevention of CMT.