MJD Foundation

Memorandum of Understanding Signed

MOU Signing


Sunday, 23 August 2009

Media Release



Malarndirri McCarthy, NT Member for Arnhem
Libby Morgan, Chairperson, MJD Foundation
Bryan Stacey, State Manager, FaHCSIA
Ian Bodill, CEO, East Arnhem Shire Council
Tony Wurramarrba, Chairperson, Anindilyakwa Land Council


The Machado Joseph Disease Foundation (MJDF) today signed a Memorandum of Understanding with the three tiers of government operating in the Groote Eylandt Archipelago and with the local traditional owners.


“We see this MOU as a commitment from all organisations to collaborate more effectively,” MJDF Executive Officer, Ms Nadia Lindop, said.


“It’s the basis from which the Foundation will continue to increase our work - in partnership with the local people - to improve the well-being of those living with MJD and their families.


“This proposed coordination is crucial. We’re dealing with the highest incidence of this genetically inherited disease in the world.


“Along with improved local care, education and infrastructural support for patients, we are looking for the MOU to help us facilitate more qualitative national and international research which directly leads to practical and real improvements in the day to day lives of MJD sufferers and works towards an eventual cure .


“The MOU with the Dept of Family, Housing, Community Service and Indigenous Affairs, the NT Department of Health and Families and the East Arnhem Shire Council is a very significant event,” Ms Nadia Lindop said.



Chairperson of the Foundation, Ms Libby Morgan, said the MJDF already has established an excellent working relationship with the Anindilyakwa Land Council.


“The common ground between our organisations is the shared belief we can improve the well-being of the people and families living with MJD within the Archipelago – and then we do it,” Ms Morgan said.


“The Foundation has already gained a reputation for being ‘doers’. We get in there and get it done and we expect the signing of this MOU to facilitate our ability to make even more of a real difference.”


MOU signatories include MJDF Vice Chair Ms Gayangwa Lalara.*


“It’s taken a long time for our people to talk about MJD and to begin to work with each other and not feel shame,” Ms Lalara said.


“Before, our needs were too great and we blamed ourselves. Now, people are listening to my family, all our communities. We’re working together here. We’ve overcome our difficulties to make sure things get better.


“It’s really good to see you all wanting to do this too. It’s black and white working together. Let’s make it work,” Ms Gayangwa Lalara said.

*Ms Larlara was featured on the front page of The Weekend Australian last Saturday 15 August 2009