Future Seminars
Sydney Awareness Day Seminar September 26, 2010
Summary: The Sydney Awareness Day Seminar will be held on Sunday September 26 at the Clinical Sciences Building, Hospital Road, Concord. There will be an interesting and varied programme including CMT people sharing "What I have Achieved Despite My CMT".. Stay tuned for more details.
Recent Seminars
Towards a Brighter Future Conference February 26 - 27 2010
Summary: A Neuromuscular Disorders Conference to be held at the University of Sydney Eastern Avenue Auditorium. The conference aims to provide an informative and stimulating environment for the advancement of neuromuscular disorders. It will be of great benefit for parents, affected persons, health professionals and educators. An excellent opportunity to network and hear from national and international speakers on research developments. Please see the attached pdf documents for more details. Flyer_mail_out_version.pdfsponsorship_final.pdf
Recent Seminars
Brief Overview of the NSW Awareness Day Seminar - 13 September, 2009
Summary: Venue: Clinical Science Building, Concord Hospital. See the attached PDF for seminar details.CMT_flyer_2009.pdf
A very informative seminar with 80 attendees participating. A DVD of the Awareness Day can be purchased from our National Office.
Contact details are available on this web site.
Brief Overview
Professor Garth Nicholson
- A very informative presentation outlining research results into CMT and other neuro–muscular disorders. It was very interesting to note that there are different types of X Linked CMT and Professor Nicholson outlined the medical explanation of the current research and spoke confidently about eventually developing a cure, and in some cases a reversal of CMT.
- An exciting initiative outlined by Professor Nicholson was the drive to fund raise $1,000,000 over 5 years to carry out neuro-muscular research in fish. He explained that nerves can be easily seen in fish and he was very confident that taking this research direction would result in major advances. The challenge is before the CMTAA to assist in fund raising to ensure that this research is carried out.
Dr. Andrew Wines
- The presentation focused on the issues associated with pes-cavus feet and the surgical procedures available to overcome this.
- Dr. Wines gave us viable alternatives to “stay on our feet”.
- Dr. Wines took questions form the floor concerning the long term viability of operating on the feet of a person with CMT and the difficulties in predicting the success or other of surgical intervention.
John Eggleston – Department of Education and Training
- John clearly outlined what is available in the NSW Education system for children with intellectual and physical disabilities.
- Every school has a School Learning Support Team and parents of children who may need additional assistance should be aware of this.
- John shared his extensive practical experience as a school principal in schools for children with a disadvantage.
Rolene Nehama – Independent Living Centre
- A very practical and entertaining presentation on what equipment is available for people with physical disabilities.
- She demonstrated the equipment that can be used to assist those with physical disabilities in most aspects of daily living.
- Gave an excellent demonstration of what equipment may be needed in a typical day to assist people with CMT related disabilities.
Kristy Rose – Physiotherapist
- Explained the benefit of overnight splinting for stretching purposes.
- Outlined a current trial over 8 months where the overnight splint was used for 4 months for foot re-alignment and 4 months for stretching with positive results.
- Reported on trials which demonstrated improvements following regular exercise.
- Spoke in favour of multi-disciplinary clinics with a focus on CMT.
- Outlined the processes in gaining knowledge into how and why casting might help a person with CMT and how these findings are affecting the future research into stretching.
Dr. Joshua Burns
- DVD interview prior to him leaving to take up the Fullbright Scholarship at Wayne University in Detroit USA.
- Explained the outcome of the Vitamin C trial and where to next.
- Discussed his plans for his time in the US.
Jillian Critchley (CMTAA Committee Member)
- Jillian gave a brief overview of the support that is available from Centrelink
Darryl Beitsch (CMTAA President)
- Outlined the future direction of the CMTAA
- We need additional enthusiastic committee members and volunteers with skills to assist in:
1. Education – CMT awareness in the community
2. Counseling – speaking to and encouraging those with CMT and those caring for them
3. Fund Raising – how the CMTAA can seriously support CMT research through significant fund raising initiatives
Recent Seminars
Queensland - 23 May, 2009
Summary: Venue: Kedron Wavell Services Club 375 Hamilton Road Chermside 4032 Phone: 07 3359 9122. Cost: $12 per person for morning tea and a light lunch. Registration: Please phone Margaret on Home: 07 38862492 Office: 07 38862962 to register your attendance.
An exciting programme with leading medical professionals sharing the latest CMT research developments as well as giving sound advice for people with CMT and those caring for them.
Recent Seminars
Awareness Day Seminar September 14 2008 Feedback
Recent Seminars
CMT Awareness Day Seminar - September 14, 2008
Sunday September 14, 2008
Concord Hospital
Clinical Science Building Lecture Hall
Hospital Road Concord
Cost is $10 per person including morning tea and lunch
This is an opportunity for anyone with an interest in CMT including those with the condition, family, carers, friends and members of the medical profession to attend.
You will hear the latest news about CMT research developments presented by leaders in this field as well as the opportunity to ask questions during the workshop session.
To register please call our National Office on 9767 5105
Recent Seminars
Newcastle CMT Awareness Day Seminar
Sunday 31st August, 2008
An excellent day was arranged by Gabbi Pizzingrilli with 40 people in attendance.
The summary of the day is as follows:
Speaker 1 – Dr Joshua Burns (Neurological Researcher)
- Be careful when strengthening leg muscles as the strong muscles may get stronger and the weak muscles do not get strengthened. Dr Burns emphasized that if a person with CMT has flat feet the leg muscles to be strengthened are different to those in a person with CMT who has arched feet. He also noted that shoes are made for people with flat feet so please be careful when buying shoes. Work on ankle flexibility for a flat foot result.
- Marshall Arts is an excellent way for children with CMT to improve balance and strength. Swimming and cycling is another excellent form of exercise for people with CMT.
- There are excellent proprietary brands of support for claw toes that will make walking more comfortable – podiatrists are aware of these.
- Results of the vitamin C trial should be through towards the end of the year.
Speaker 2 – Peter Adrick (District Guidance Officer, NSW Department of Education and Training)
- Assistance for children with CMT at school.
- There are codes available to determine the level of support available.
- Contact your child’s school to arrange a Learning Support Meeting.
- Each school district has a Disabilities Support Programme Officer.
- It is essential that as much “normalizing” as possible is done for children with a disability as they need to be accepted for who they are, not the condition they have.
- It is very important that children with a disability have a circle of school friends.
- Children with a disability can assist at the school carnival by being time keepers etc rather than suffering the embarrassment of competing.
Speaker 3 – Jenny & Odette (Paediatric Physiotherapists)
- Hamstring and calf muscle stretches.
- Types of casts – prefab night splints, soft cast splints.
- Encouraging children to get into suitable sport
- Physiotherapists can provide letters to sporting groups outlining the challenges a child has due to CMT.
- Theraband exercises for strength.
Speaker 4 – Rachael Brent (Occupational Therapist)
- Try to maintain function.
- Handwriting assistance – prescribed assistance devices, pen grips, slope boards, soft splints for hands, note takers.
- Light weight robust laptops, ball track mouse.
- Word predictive text software.
- Utilise Occupational Therapists to get things in place for students with CMT when transitioning from Primary to High School.
- Daily routines with fine motor skills.
Speaker 5 – Mark Faraguna
- Patient assessment – gait, centre of gravity, deformities.
- Joint range of motion, skin condition, muscle strength.
- Fixed AFOs – not flexible $300 to $400
- Articulated AFOs – more flexible, smoother gait $450
- Composites – not good for uneven surfaces, can crack and break.
- Custom composite – more complex to make, carbon fibre, cannot be heated to adjust.
- Silicone AFOs – not suitable for children as they grow too fast $2000
- Children need regular revues due to growth changes.
Speaker 6 – Feedback by Patricia Darnley-Stuart on the Children’s Workshop
- We were all greatly encouraged by the positive attitude of the children who participated in the workshop.
- To recognise that children with CMT can do different jobs at school which are just as important such as participating as helpers or timers if they cannot participate as athletes.
National Office:
(02) 9767 5105
Fax:
(02) 9767 5167
Email: