We are grateful to Professor Kiernan and others and Elsevier for permission to publish this recent review on the MNDcare site. It was published in the Lancet in February this year.
The review focusses on: "what is known about ALS and where research is heading—from the small steps of extending longevity, improving therapies, undertaking clinical trials, and compiling population registries to the overarching goals of establishing the measures that guard against onset and finding the triggers for this neurodegenerative disorder."
Topics discussed include:
- Epidemiology and molecular genetics
- Clinical phenotypes and prognosis
- Overlap with fronto temporal dementia
- Pathophysiological mechanisms
- Diagnosis
- Advances in neuroimaging
- Management and prevention
22nd International Symposium on ALS/MND - 30 November - 2 December
The program for the Sydney Symposium and satellite meetings is now available. Organised each year by the MND Association of England, Northern Ireland and Wales this is only the second time MND Australia has hosted the Symposium in its 22 year history. It presents a wonderful opportunity for Australian health and community care professionals to catch up on the latest developments in research and care. In addition to the main conference program we would like to highlight some satellite meetings that may be of particular interest to local health professionals and their clients:
Ask the Experts - November 28 (14.00hrs- 16.30hrs)
People living with MND, their family and friends have the opportunity to ask international experts about the latest developments in MND care and research.
There is no cost for this session. MND Australia has received funding from the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs under the National Disability Conference Initiative to support attendance of people with MND and their carers. This funding enables MND Australia to live stream the event via a dedicated website. People with MND who are unable to attend the session will be able to view the event online in real time. Details will be at www.mndaust.asn.au as soon as they are available.
Please let your MND clients know that this meeting will be held prior to the Symposium.
Talking about sexuality - December 1 (8.30 -10.30)
Sexuality is an area often neglected in the spectrum of care of people with MND and their partners. This 2 hour workshop will be run by Bridget Taylor a senior lecturer in sexual health at Oxford Brookes University, England. Bridget currently delivers short courses in sexual health and also end of life care. Bridget's presentations at last year's symposium at Orlando were very well received. Places for this workshop are strictly limited and prompt registration is essential.
Asia Pacific Network Meeting - December 1 (18.00 - 19.00)
Hosting the Symposium in Sydney provides the perfect opportunity to explore the needs of people with MND and their families in the Asia Pacific region as well as those of professionals involved in their care.
The International Alliance supports the exchange of information between countries with the aim of increasing knowledge, public awareness and political advocacy to improve care of patients with ALS/MND and their families. Funding is available through the International Alliance ALS/MND to help establish new ALS/MND Associations in countries where none currently exist and to help support newly formed Alliance member associations. For more information see - International Support Grant Program: http://www.alsmndalliance.org/aboutus/support_grant.html
Partnership Programs have previously been established by the International Alliance, ALS Society of Canada and MND UK to assist fledgling MND/ALS Associations in Turkey, Serbia and Brazil.
For more information on Partnership Programs see the presentations by Kathy Mitchell and Rachael Marsden on the following link:
http://www.alsmndalliance.org/resources/orlando-2010.html
The goals of the Asia Pacific Networking Meeting in Sydney are to:
- Explore possibilities of establishing partnership programs to assist the support of MND clients and professional care providers in the Asia Pacific region
- Look at common barriers to improving services for people with MND and their families
- Learn from others who have had useful targeted experience
- Investigate the possibility of establishing networks for peer support of service providers within the region
If you are interested in attending this meeting advance notice would be appreciated. Please contact carolb@mndaust.asn.au
You can download the Symposim program here for details of these two satellite meetings on page 4. Please note you will need to be a Symposium delegate to attend these meetings.
Allied Professionals Forum (APF) - November 29
This full day program provides the ideal opportunity for allied professionals to learn about recent trends in best practice care and to meet and discuss aspects of MND care with peers from around the world.
The APF program is full and interesting covering a range of issues in MND care including respiratory, emotional, nutritional and cognitive issues, communication equipment, advance care planning and peer support supervision for the care team. See APF program on page 5 of the International Symposium Program.
Registration for this Forum is separate from the main program of the Symposium and is great value at (current exchange rate) approx $134.00. Take advantage of the high Australian dollar and Don't miss this extraordinary opportunity! - Hurry to register online for the APF and main Symposium now as registration fees will increase in November.
