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Issue #1629      March 5, 2014

$10m funding blow for MJD Foundation

Federal Indigenous Affairs Minister Nigel Scullion has withdrawn $10 million in funding from the Aboriginals Benefit Accounts (ABA) to a charitable foundation that looks after Aboriginal people in the Northern Territory with a rare hereditary wasting disease and their families.

Sisters Sharon Thompson and Stephanie Nganjmirra have Machado Joseph Disease, a rare degenerative wasting condition that mainly affects Aboriginal people of Arnhem Land in the Northern Territory, where there is little to no access to mainstream medical care. Federal Indigenous Affairs Minister Nigel Scullion has overturned a $10 million grant from the Aboriginals Benefit Account to the Machado Joseph Disease Foundation, which provides on-the-ground care, advocacy, research and support to people with MJD and their families. (Photo courtesy of the Machado Joseph Disease Foundation)

In July last year, the Machado Joseph Disease Foundation (MJDF) received written confirmation from Labor’s Indigenous Affairs Minister Jenny Macklin that she had approved an extension of its original ABA grant in 2010 from $6 million to $16 million.

But following the election of the Coalition government, Senator Scullion overturned the decision, advising the MJDF that it was not in line with the policy of the ABA, but saying his department would work with the foundation to explore other funding sources.

“This grant was for $10 million to invest so it could use the earnings to cover operational and other ongoing costs,” Senator Scullion said. “This is an unusual use of Aboriginals Benefit Account monies.

“The only other example of a grant being used to provide earnings to cover operational costs that has been brought to my attention was a previous $6 million grant to the same foundation in 2010, which was to be invested to ‘cover operational cost for the MJD foundation to enable it to be sustainable for many, many years to come’. The Aboriginals Benefit Account advisory committee had concerns about the $10 million grant, but it appears the Minister ignored that advice.”

Ms Macklin did not reply to a question asking what advice the advisory committee had given her.

MJDF vice chair Gayangwa Lalara, a Warnindilyakwa woman of Groote Eylandt, has lost six brothers and sisters and her father to MJD and has written to Senator Scullion asking him to reconsider.

“On January 10, 2014 my sister’s daughter died from MJD,” she wrote. “She was only 44 years old, she is the first of her brothers and sisters to die so young but she has two brothers and a sister so far with MJD and we know that they will die very young too.

“There are many more in my family and in other families in communities across the NT who have MJD and who are living with dying bodies every day. My niece’s life was very hard, but it was a better one at the end because of the MJD Foundation.

“You know that the services we have in our communities are not like the services in towns and cities. We wait a long time for help, especially for disabled people. We wanted to help ourselves and take responsibility and so we made this MJD Foundation.

“Our communities supported it and so did our land council on Groote Eylandt, the ABA and a number of business and philanthropic sponsors. Our MJD Foundation gives us hope that there is help for people with MJD.

“By reversing the previous approval of a $10 million grant variation, you have damaged some of this hope. It makes us feel like this new government no longer wants to help us. For so long we felt shame and we blamed ourselves for this disease, we tried to help ourselves with this MJD Foundation, and did not need to feel ashamed any more”.

Ms Lalara said she attended a meeting of the Northern Land Council last year and was told it supported the ABA grant. The ABA is an account established under the NT Aboriginal Land Rights Act to receive and distribute royalty money generated from mining on Aboriginal land in the Territory. The ABA advisory committee consists of 14 members elected by the four NT land councils and an appointed chair, but the final decisions on how Aboriginal money is spent rest with the Indigenous Affairs Minister.

ABA advisory committee member Maurie Japarta Ryan told the Koori Mail newspaper that he believes responsibility for the account should be in Aboriginal hands.

Calls for Senator Scullion to reinstate the grant have come from Country Liberal Party MPs Larissa Lee (whose electorate covers Groote Eylandt) and Alison Anderson, as well as Labor NT senator Nova Peris. “My biggest disappointment is the federal minister, Nigel Scullion – I am appalled by his action – disgusted,” Ms Lee told the NT Parliament.

“I am related to the Groote Eylandt people. Pulling that funding out is the worst thing you can do. These people only have a 20-year life span and that is devastating. They will not live for long. It comes to a disability point where they start dribbling – they will not be able to hold their body fluids in. This is what MJD is.

“They cannot eat any more. Pulling the services out is the worst thing to do. You have to have a heart when you walk into this business. You have to stay true to yourself.”

MJDF Board and ABA advisory committee member Tony Wurramarrba also expressed his disappointment that “the decision to overturn the grant variation was decided by a Minister who refused to meet or be briefed by the MJDF on the implications of overturning the previous approval. It is also disturbing that the Minister appears to have made his decision without recognising the overwhelming challenges involved in meeting the current and projected needs of people and families living with MJD, who, because of this terrible disease, are arguably amongst Australia’s most disadvantaged Aboriginal citizens,” he said.

MJDF research and community services director Libby Massey said that on the expectation of receiving the funds, the foundation had made commitments to families living with MJD. “We read Senator Scullion’s letter with disbelief, we were quite dumbfounded and confused, and in fact had to go hunting for information because we believed we had a solid agreement in place,” she said.

“These funds are needed so much that ‘desperately’ doesn’t even cover it. Apart from what the MJDF does there are no hands-on therapy services in any of the communities affected.

“We really like to respond directly to issues raised by families, find out more about ways things might be done to slow down progression of the disease.”

Ms Massey said that because MJD is genetic, families could end up with three generations – grandparents, parents and children – all suffering from it at once.

“That informal care that families often provide and that Aboriginal people are so good at providing isn’t possible, and that’s another reason people need extra support,” she said.

The MJDF has launched a campaign to ask Senator Scullion to visit Groote Eylandt and to change his mind. To sign the petition go to www.communityrun.org/p/mjd

For more information about the MJDF and MJD go to www.mjd.org.au

Koori Mail


The facts about MJD

Machado Joseph Disease (MJD) – also called spinocerebellar ataxia Type 3 (SCA3) – is one of about 30 recognised, dominantly inherited forms of ataxia. Ataxia is a general term meaning lack of muscle control or coordination.

  • People with MJD exhibit clumsiness and weakness in the arms and legs, spasticity, a staggering lurching gait (sometimes mistaken for drunkenness), difficulty with speech and swallowing, involuntary eye movements, double vision, and frequent urination/incontinence. Sustained muscle contractions cause twisting of the body and limbs, repetitive movements, abnormal postures, and rigidity or symptoms similar to those of Parkinson’s disease.
  • MJD is an inherited, autosomal disorder, meaning that each child of a person who carries the defective gene has a 50 percent chance of developing the disease.
  • People with MJD retain their cognitive capacity and intellectual function.
  • The mutation is typically worsened when it is passed to the next generation. This means that the symptoms of the disease can sometimes appear around 8-10 years earlier in each successive generation, and are more severe.
  • There is no known cure.
  • Progression to dependence occurs over five to 10 years after the onset of symptoms and most people are wheelchair bound and fully dependent for all activities of daily living within 10 to 15 years.
  • Previously known as “Groote Eylandt Syndrome”, the effects of MJD have been known to the Aboriginal people of this region for at least four generations.
  • There are people living with the disease on Groote Eylandt (Angurugu and Umbakumba), Bickerton Island (Milyakburra), Yirrkala, Elcho Island (Galiwin’ku), in Darwin, at Ngukurr, Birany Birany, Numbulwar, Papunya, Hermannsburg, Santa Teresa and Gunbalanya (Oenpelli).
  • There are about 550 people thought to be at risk of developing the disease across the Top End (direct descendants of those with the disease).

Information sourced from the MJDF

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