Sunday 4 July 2010

MJD Foundation

Started working on a small project for the MJD Foundation, based out of the Northern Territory of Australia and started by good friend Libby. I am very happy to contribute and be involved in the good work supporting MJD sufferers and their families. 

Machado-Joseph Disease (MJD) is a hereditary neurodegenerative disorder that is found to be significantly prevalent in the Northern Australian indigenous population. Found worldwide, it is thought to have been carried to this country by Portuguese traders and sailors. MJD occurs due to a fault on chromosome 14q resulting in the production of an abnormal protein called 'Ataxin 3'. This protein causes nerve cells to die prematurely in the cerebellum resulting in muscular weakness and progresses over time to total lack of voluntary control and very significant permanent physical disability. Similar to Huntington's disease, MJD manifests with similar symptoms though without any cognitive deterioration.



Here’s the latest news from the MJD Foundation

Aircraft Wheelchair Lift launchA Small Grant Travels a Long Way
On June 8th, the MJD Foundation launched new aircraft wheelchair lifts at Vincent Aviation,
Darwin International Airport. "This is a very proud moment for us and it sends a powerful
message of how a relatively small amount of money can have a huge impact on people's lives".
=>Read More about the project here

Photo GalleryGo to our photo gallery here.



Simone McGrath
Welcome to our new Manager, Community Services
Simone McGrath joined the MJD Foundation in June 2010 and is the MJD Foundation's Manager of Community Services based On Groote Eylandt. 
In addition to supporting the MJD Foundation's core activities across research, education, equipment, improved services and advocacy across the region,
Simone will be responsible for the establishment and operation of our new MJD Therapy Program.
The MJD Therapy program will bring therapeutic treatments such as hydrotherapy, physiotherapy, speech/swallowing exercises etc to MJD sufferers for the first time.
Simone will establish the MJD Therapy Program on Groote Eylandt before rolling it out to other Indigenous communities affected with MJD.



Troopy Gifted Vehicle
In May 2010, the MJD Foundation received a donation of a Toyota Landcruiser Troop Carrier from the NT Governement's Community Benefit Fund.
The vehicle will be shipping to Groote Eylandt free of charge by Perkins Shipping, and will be allocated to Simone to help implement our MJD Therapy Program.





Bronwyn Daniels.jpgNewly Recognised MJD in the Top End

In late 2009, the MJD Foundation received correspondence from the Sunrise Clinic in Ngukurr on the Roper River in the NT.
In May 2010, the MJD Foundation visited Ngukurr with Dr Malcolm McDonald to investigate what was thought to be 2-3
MJD cases.
What we found when we arrived has deeply worried us.  In addition to the 5 local people now identified with symptomatic MJD,
there are likely to be a few more we weren’t able to see. MJD gene studies have confirmed the diagnosis.
Going back through histories and records it also appears that a number of Ngukurr people have died from undiagnosed MJD over the last 3 decades.  

Libby Massey from the MJD Foundation supervised the process of collecting historical data and constructing a family tree.
It has emerged that there are at least 90 people in the community at risk for MJD - possibly more than 100.
Give the phenomenon of the Anticipation effect (which sees the next generation exhibit symptoms earlier),
we expect to see many of these cases sooner rather than later. 



Great Wall MarathonMatt runs the Great Wall of China Marathon for MJD
In May 2010, Matt Ashcroft ran the Great Wall Marathon and raised over $4,000 for the MJD Foundation.
To see more about his amazing effortclick here.







Baniyala RailsRotary Club of Sydney Cove build stair rails at Baniyala
A dinner party conversation in Sydney lead to the Rotary Club of Sydney Cove offering their volunteer services
to the MJD Foundation to build some urgently needed rails for an MJD sufferer in Baniyala, Arnhem Land.
Read more about the project here.

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