MJD Foundation

UQ joins the fight against MJD

4/10/2009
By Melissa Rasmussen

Northern Territory's Indigenous Machado-Joseph Disease sufferers are set to benefit from new speech/swallowing research, the MJD Foundation announced this week.

The research project is funded by the Arnhem Land based MJD Foundation and has engaged the University of Queensland School of Health and Rehabilitation Sciences.

Executive Officer for the MJD Foundation, Nadia Lindop said speech and swallowing disturbances is a common and problematic disorder with patients affected by MJD.
"The MJD Foundation has funded the University to carryout the research on Groote Eylandt," she said.
"After phase one has been completed, they (Speech and Swallowing Project researchers) will present to our Research Advisory Committee and discuss plans for phase two."

Once known as ‘Groote Eylandt Syndrome', Machado Joseph Disease is a hereditary neuro degenerative condition, caused by the production of an abnormal protein.  The protein causes nervous cells to die prematurely in the cerebellum part of the brain.
As a result, the disease causes muscular weakness and progresses over time to a total lack of voluntary control, making its sufferers permanently physically disabled.

The speech and swallowing project kicked off early this September, with approximately 18 indigenous sufferers of MJD and a small control group without MJD participated in the program.

UQ Professor Deborah Theodoros and Assoc Professor Liz Ward have structured the project in two phases, phase one being the research into the Speech and Swallowing disturbances in individuals with MJD.
Phase two is expected to identify effective service delivery models, which would stay consistent with the population, culture and environment.

Chairperson of the MJD Foundation, Libby Morgan believes that the first phase will highlight problem areas, so that there can be more effective treatments for indigenous communities living with MJD.
"People with MJD will experience immediate benefits, and were clearly motivated to participate, and excited to trial equipment and technologies," She said.
The project will focus the research on indigenous communities of the Groote Eylandt archipelago (Angurugu, Umbakumba, Milyakburra), however outcomes will be applicable to all MJD sufferers across the NT including Yirrkala, Galiwin'ku, Darwin, Ngukurr, Birany Birany, Numbulwar, Papunya (near Alice Springs) and Oenpelli.

Indigenous Australians have been living with the affects of MJD for four generations, and now there are likely to be a further 400 people who are suspected as being at ‘risk' of developing the disease across the top end.

Project Progress:

• In March 2009, the MJD Foundation invited Associate Professor Deb Theodoros and Associate Professor Liz Ward (University of Queensland - School of Health and Rehabilitation Sciences) to Groote Eylandt to scope a project around Speech and Swallowing.
• In June 2009, the MJD Foundation awarded funding to the University of Qld for phase 1 of the project.
• In August 2009, Ethics Approval was received through Menzies.
• The project formally kicked off in September 2009 with Assoc Prof's Deb Theodoros and Liz Ward visiting Groote Eylandt, Bickerton Island and Darwin to assess Warnindilyakwa Machado Joseph Disease sufferers, along with a control group.