Proposed Amended CMTAA Constitution

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,

            Hospital Road,

            Concord Hospital, Concord, NSW.  (Entrance through Gate 3) 

Australian Para Olympic Talent Search

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 DATES

Testing will be conducted in the following cities over the coming

months:

            * 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

https://www.paralympic.org.au/talent-search-registration-form/ 

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

intellectual impairment
 

FURTHER INFORMATION

 

TIM MATTHEWS l   Talent Specialist

Australian Paralympic Committee | PO Box 2247, Gladstone Park, Vic, 3043

T: +61 3 8633 9002  | M: +61 419 321 008 | E:

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Member Survey Results

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:

  • To access information on CMT
  • To keep up to date with CMT Research
  • To help them with the management of their CMT
  • To network with other CMT sufferers

 

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:

  • Helping our members navigate the NDIS
  • Supporting a multi-disciplinary clinic and other support for adults with CMT
  • Improving the awareness of CMT within the medical community particularly with respect to GP’s.

 

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

 

Tony Adams

President

 

 

 

Reducing the Health Burden of Charcot Marie Tooth in Australia

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:

https://www.cmt.org.au/uploads/pdf/reducing-the-health-burden-of-cmt-in-australia.pdf

CMTAA Strategic Plan
Fundraising for the CMTAA

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: cmtaa2@cmt.org.au

If the office is unattended, please leave your name and contact number and we will get back to you.

CMT Aussie Kids 2016 You Tube Link

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:

https://youtu.be/w1INzIBZlW4

This link can also be found under "Current Activities" and then "Youth Activities".

CMTAA DVDs

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:

  1. Go to www.cmt.org.au
  2. On the Home Page under the Become a Member section on the right hand side, please click on Apply for Membership.
  3. Please complete all the online application fields.

It is vital that the email address that you enter is correct as this will be your Username.

  1. Please record the password that you enter as this will be needed once your membership is activated.
  2. There is no need to pay any money unless you would like to renew your membership ahead of your renewal date.
  3. We understand if you are unsure of your current financial membership status. We will advise you if you need to renew your membership so that once payment is made we can activate your member login access.

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.

 

Moving Forward with CMT

Background
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:

  • What is CMT?
  • CMT diagnosis and beyond
  • Family planning
  • Medication safety and CMT
  • CMT and your feet
  • Orthotists
  • Foot surgery
  • CMT Aussie Kids - a well established annual weekend to encourage the younger members of the "CMT Family"
  • Outstanding achievements by members of our "CMT Family"
  • A brief overview of CMT expertise that is available

Please click onto the link below to view the PDF version of this informative booklet.

CMT_Brochure_final_small.pdf

Should you require a hard copy, please contact our National Office on 02 9767 5105.

The cost is $5 that covers postage and handling. 

CMT Awareness

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.

CMTAA Represented in Venice
2016 Brisbane National Awareness Day Overview

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.

 

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CMT Gene Explorer App.
Curtin University Transportation of Children with Disabilities Survey
South Australia Awareness Day 2015 DVD
The Paul Thomas Story
Prof. Ouvrier Honoured
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.
CMT and Medication Safety Research

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:

http://canberrahealth.az1.qualtrics.com/SE/?SID=SV_8whOEmj4cH8lw1v
Clinical Practice Guidelines

Please click onto the Medical Professionals link on the home page and then in the drop down box click onto Clinical Practice Guidelines.

Dr. Che Fornusek Interview
CMT Awareness Hits the Radio Waves
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2017 National Awareness Day Presentations Now Available

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".

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CMT Specific Survey

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.

CMT Aussie Kids 2014
Emeritus Professor Robert Ouvrier

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.

http://cmt.org.au/uploads/files/080814Mediarelease-EmeritusProfessorRobertOuvrier.pdf 

2013 CMT Awareness Day Seminar

Children’s Research Extended to Regional NSW

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

  • The trial aims to strengthen the most affected muscles in CMT; the muscles that lift the foot up. Foot weakness is a major problem and contributes to falls, ankle sprains, foot deformities and disability.
  • There is currently no treatment for this problem. 

What's involved

  • The trial consists of a 6-month exercise program with a 2 year follow-up to
  • There are two exercise programs, one with low intensity and one with a high intensity. The treatment the child will be allocated to is randomised.
  • The 6-month exercise program involves doing the exercise 3 sessions a week at home and takes about 20 minutes in total per session.
  • There is one fortnightly session with a physiotherapist at the Children's Hospital at Westmead at Sydney Children's Hospital Randwick or at home
  • Training times are dependent on the location and availability of the therapist/participant.
  • There are 4 big visits to The Children's Hospital at Westmead for outcome measurements to see the effects of the exercise. These are conducted at baseline, after the training program, at 12- and 24 months on a Monday or Thursday from 12-4pm.

What is in it for the participants

  • There are no treatments for CMT. Participating in this trial means that children are in the unique position that they are the first to receive a potential treatment that is closely monitored by a physiotherapist
  • This trial includes close monitoring of the child's progression for 2 years using sophisticated measures such as the CMT Pediatric Scale that measures disability, MRI of the muscles and 3D analysis of the child's gait.
  • It will provide this generation and future generation with more information regarding management of CMT and will give researchers information to target future research in finding a cure
  • Financial assistance is offered for the travel to Westmead during the 4 outcome measurement visits

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 amy.sman@sydney.edu.au | E amy.sman@health.nsw.gov.au

CMT Motivates Trek to Mt Everest Base Camp

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.

http://www.busybird.com.au/?page_id=4478

Research Studies in Melbourne and Sydney

Melbourne
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.

The_Triple_F_study_advertisement_v1.pdf

Sydney
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.

Childrens_Research_Feb_2014_.pdf

Sydney
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.

CMT_Muscle_Strength_Advertisement_Flyer_Version3_FINAL_22Jan2014.pdf

Human Clinical Trials Announced for CMT1A in Geneva
CMT DVD’S FOR SALE!


We have a range of great DVD's available to purchase online..

1. CMTAA Seminar DVD - 2013 

2. CMTAA Seminar DVD - 2012
3. CMT Hand Exercises DVD
4. PACKAGE: CMTAA Seminar DVD 2013 & CMT Hand Exercises
Please contact the office if you have any questions or simply hit "Buy Now" to purchase your preferred DVD.
Genetic Testing
“The heirloom no one wants”
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Foot Problems in Children With CMT

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.

Foot problems in children with CMT 2009.pdf

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ANZAC Research Institute – Family Studies and Identifying New Genes Causing CMT

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
We are actively recruiting CMT families and family members for our research. If you or your family are interested in participating in our research please contact Carolyn Cecere at .(JavaScript must be enabled to view this email address) or (02) 9767 7016.

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.