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
National Office:
(02) 9767 5105
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(02) 9767 5167
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