MJD Foundation

Telstra visits Groote

Connecting Our Most Disadvantaged Australians

 David Thodey and Gayangwa Lalara

Telstra CEO David Thodey talks with MJDF Vice-Chairperson Gayangwa Lalara.

The successful MJD Foundation iPad project will be rolled out across Indigenous communities affected by Machado Joseph Disease (MJD) thanks to a $300,000 Telstra Foundation grant.

Telstra Chairperson, Catherine Livingstone, Telstra CEO, David Thodey and Telstra executives visited the remote Aboriginal community of Angurugu on Groote Eylandt to see first hand how iPads and telecommunications are improving the lives of Indigenous Australians with Machado Joseph Disease. Mr Thodey announced a $300,000 grant to continue and expand the successful communication, education and employment project.

MJD Foundation Board Member and Senior Cultural Adviser, Ms Gayangwa Lalara said, "Today is important for us, we know that our family who are affected by this disease, MJD, can now talk to doctors using their iPad. And, like my son, Steve Wurramara, continue to make movies - to tell our cultural stories and other stories that are important to us."

Telstra and MJDF team

Telstra and Telstra Foundation Executives with the MJDF team.

"It makes me happy, knowing that with this money, other communities with MJD, Elcho Island and Ngukurr, will also get this program," she said.

On the advice of Speech Pathology experts from University of Queensland, the MJD Foundation began trialling Apple iPads and the associated communication app Proloquo2Go in late 2010 for severe MJD clients who experience anarthria (complete loss of speech). Typically, MJD clients require an augmentative and alternative communication device in the severe stages of the disease, and, the Apple iPad inparticular is proving to be a useful tool. During the initial trial, the MJDF discovered that iPads also provide an invaluable empowerment tool for mild and moderate clients, markedly improving social and emotional well being outcomes especially for younger people who are at-risk of dropping out of school.

A devastating feature of MJD is that each new generation experiences an ‘anticipation effect', meaning that onset of symptoms usually occurs earlier and the disease progresses more rapidly. The MJDF has clients as young as 13 years old. Previous experience shows that those young people tend to disengage from school rapidly after early symptom onset for a variety of reasons, and the iPad is being trialled to assist with school retention and provide greater opportunities for learning as their disease progresses.

MJDF Director of Community Services and Research, Ms Libby Massey said, "Working with a clinical psychologist, we determined that the key issues nominated by the young Indigenous Australian men affected by MJD are validation in their family and community role, empowerment and strength."

"We haven't found a more inclusive tool, one which increases communication, enhances social and emotional wellbeing, improves the understanding of MJD (through videos and apps), encourages education and provides for employment opportunities," said Ms Massey.

MJDF worker, who leads the iPad team and has MJD, Steve Wurramara said, "It is exciting that Telstra have come to Groote Eylandt today to support our mob with MJD."

"I enjoy teaching my family how to use the iPad - it makes me feel proud."

"It felt good explaining why making movies is so important to me," he said.

The Telstra delegation met one-on-one with MJD clients and heard how they each use their iPads and telecommunications more broadly.

Over three years, the Telstra Foundation grant will enable: access to iPads; one-on-one tutoring, including English literacy programs; local employment opportunities; and the development of education tools including Machado Joseph Disease ‘apps'.