MJD Foundation

The MJD Foundation is a charity, established in 2008 to seek to improve the quality of life for Indigenous Australian Machado Joseph Disease sufferers and their families in Arnhem Land and beyond.

We are currently piloting our activities on Groote Eylandt and Bickerton Island, and plan to roll out to other affected areas of the NT.

The MJD Foundation is achieving this by providing practical solutions around:
• Education/Training
• Research
• Equipment/Support
• Advocacy
• Services

Education/Training
Current initiatives in this area include:
• Working with partners on genetic education
• Working within communities to understand MJD
• Training

See some of our projects so far:
• Genetic Education with Genetics Queensland
• In-Services and Education Sessions
• Conference Speakers
• Young Men's Camp

Research
Current projects are based on seeking practical solutions to help sufferers and their families.

See some of our projects so far:
• Sleep studies
• DNA Haplotyping
• Speech and Swallowing research
• Urinary Incontinence research

Our Research Advisory Committee was set up in Aug 2009 to provide international expertise to the MJD Foundation.

Download our Research Grant Information Guide here.

Equipment
Facilitating the supply and installation of appropriate adaptive equipment to individuals’ homes and community facilities in conjunction with government departments.

See some of our projects so far:
• Jock's Ramp
• Electric Beds 
• Portable Ramps
• Beach Wheelchairs
• Stowaway Portable Wheelchairs
• Custom wedge ramps
• Washing Machines/Clothes Driers
• Electric Wheelchair
• Glow in the Dark products
• Pool Hoist
• Equipment Storage Pool on Groote Eylandt
• Natalya's Ramp
• Stair Rails
• Small Equipment Grants for Non-Indigenous
• Aircraft Wheelchair Lifts

Advocacy
Advocacy activities undertaken by the MJD Foundation include:

• Bi-partisan approach that remains politically unaligned. 
• Policy advocacy on behalf of MJD sufferers and their families that aims to improve their well being and quality of life through adopting international best practice and promoting practical research.
• Raising public and private sector awareness about MJD and the needs of sufferers and 
• Fundraising ie encouraging individuals, corporations and governments to donate funds towards supporting the ongoing work of the Foundation. 

See some of our activities so far:
• TV Advertisement
• Submissions to government (eg TIMES)
• Letters of support re: housing, employment
• Supporting employers with individuals'plans
• Newsletters
• Annual Reports
• Magazine articles
• Media releases and media interviews
• Speaking at Conferences
• Speaking at fundraising events
• In-services/Education

Improved Services
• Better options for transport for MJD sufferers
• Working to increase care options
• Additional respite trips for sufferers and carers

See some of our projects so far:
• Frederick and Bryan's Road Adventure 
• Roseanna's Seaworld/Movieworld Adventure 
• Jock's holiday to QLD
• Joyce and Melinda Lalara's family trip to QLD
• ICV - Volunteer partnership
• Aircraft Wheelchair Lifts for improved travel

Chairperson - Libby Massey (Morgan)
Libby grew up at Angurugu on Groote Eylandt and her family have lived there for nearly 40 years.

She has known the Groote MJD families since she was a small child and having had the opportunity to study Occupational Therapy, Public Health and Law, ‘down south’ believes passionately in the need to provide equality in care options in remote communities.

In collaboration with Anglicare NT, Libby project managed the development of the Aged Care Facility at Angurugu and helped establish the programs that operate from it. She sees the MJD Foundation as the logical next step to secure a dignified future for the families with MJD on Groote and across the other remote communities where it occurs.

Click here for a message from our Chairperson.

Vice-Chairperson - Gayangwa Lalara

Gayangwa is a Warnindilyakwa woman of Groote Eylandt in Arnhem Land, she is 64 years old, and MJD has been a part of her life as long as she can remember.

Her father developed the disease when he was an older man, and all 6 of her brothers and sisters were affected by their 40’s. She has been a carer for two of her sisters’ children for over 15 years.
Now the third generation of her family are sick - her 14 year old niece is already using a wheelchair.

Few people have the insight and experiences living with the disease that Gayangwa has, and she brings to her role within the MJD Foundation a fierce determination to improve life for her family. Her journey through ‘shame’ and ‘blame’ to proudly champion their needs is an encouragement to the many people she meets and her quiet dignity and perseverance for them an inspiration.

Treasurer - Doug Talbert
Doug was elected to the MJD Foundation Board in August 2009.  Doug brings a wealth of business knowledge to the Foundation, and some of his credentials include:

-4 years experience as a Solicitor in NSW (80/84)
-10 years experience as a director of a merchant bank (85/95)
-13 years experience running several businesses of my own (96/09)
-degrees in commerce and law, and a masters in bioethics from Sydney University (completed last year)
- Board member of The Housing Connection www.thc.org.au
-volunteer for the MS Society and Greenwich Hospital (hands on)
-previously a legal and property advisor to the MND Foundation
-two years on the ethics committee of the Sydney South Western Area Health Authority
-part time home carer for the elderly.

Secretary - Kathy Massey

Kathy and her husband Bryan lived and worked on Groote Eylandt for almost 40 years. Initially they came to Groote Eylandt with the Anglican Church Missionary Society and then worked with Anglicare NT in establishing Substance Misuse programs in the Angurugu and Bickerton Island communities.

In the early 90's Kathy began coordinating Aged and Disability Programs and for the past 8 years has managed the Mungkadinamanja Aged and Disability Services for Angurugu and Bickerton Island communities. The programs have grown significantly and there is now an Aged Care Facility at Angurugu.

Kathy has had hands on experience in the daily care of MJD sufferers and their families. The MJD Foundation has been a long held dream of both Bryan and Kathy.

ALC Representative - Tony Wurramarrba

Tony Wurramarrba is a Warnindilyakwa man of Groote Eylandt.
Tony is the son of Murabuda Wurramarrba, a senior culture man for the Warnindilyakwa people of Groote Eylandt.
Tony was educated at Angurugu primary school and Dupuma College at Yirrkala in North East Arnhem Land.  Tony has always been a leader of his people and a dedicated family man.
He has previously been mentored as the Council Clerk with the Angurugu Community Government Council and took on the Council Clerk role for many years, a role he filled with distinction.
In more recent years Tony has used his past experiences to take on the Chairmanship of the Anindilyakwa Land Council. In this role Tony has been instrumental in helping to develop the business arm of the Anindilyakwa Land Council, GEBIE into a significant business enterprise.
The Anindilyakwa Land Council under Tony’s leadership has developed into a strong Land Council who focus on securing a future for their own people.

Medical Advisor – Professor Garth Nicholson
Professor Garth Nicholson is a world leader in neurogenetics having identified the genes for several neuromuscular disorders resulting in four papers in Nature Genetics. As a keen light plane enthusiast, Professor Nicholson happened upon some Indigenous Australian’s with a stagger in remote North East Arnhem Land. This appeared to him to be neurological, and he has remained a supporter and leader in pushing for further research in identifying the condition as MJD.

Family Representative – Jenny Baird
Jenny Baird is a primary carer of her husband, Warren Lalara who has suffered MJD for 16 years. Warren’s care needs have intensified and he now resides in a nursing home. They have 2 children and the question remains how this disease will affect them.
Jenny has strong ties with Carers NT. This advocacy role has lead her to speak on behalf of carers both nationally and internationally.
Jenny’s tertiary qualifications include a Bachelor of Teaching, Graduate Certificate in Accelerated Literacy and Masters in Education. She is currently employed as Higher Education Lecturer with Batchelor Institute of Indigenous Tertiary Education.

Policy Advisor – Neil Westbury
With over 30 years professional experience working in Indigenous affairs and public sector management Neil has:
• extensive knowledge of, and familiarity with, the complex range of economic and social issues impacting on Indigenous community and business development, and on related policy formulation and implementation;
• a sound knowledge of Indigenous cultural diversity in remote, rural and urban settings;
• a wide national network of contacts in Commonwealth, State and Local governments, as well as with Indigenous organisations at all levels and a strong international network;
• substantial expertise in policy and strategy formulation, and program implementation.

Executive Officer - Nadia Lindop

Nadia has spent the last 20 years in the corporate world where she has specialised as a business consultant in Australia, New Zealand, North America and Europe. She ran a consulting company for 10 years, which employed 35 people across Sydney and Canberra and delivered business and IT services to clients in Australia and New Zealand.

Through a friendship spanning over 10 years Nadia and Libby had often talked about MJD, the impacts on the community, and the need for a foundation that could collaborate with government, research institutions and corporate sponsors to improve lives.

Nadia is responsible for the day to day administration, finances and management of the MJD Foundation, and reports to the Board.

Director, Research and Community Services - Libby Massey (Morgan)

Libby is responsible for the overall delivery of the MJD Foundation's services, as well as all research and education projects. 

Community Worker - Groote and Bickerton - Gayangwa Lalara

Gayangwa is the first of several Community Workers that will be employed by the MJD Foundation.  Gayangwa covers the Groote Eylandt and Bickerton Island Communities.  Her responsibilities include:
- Coordinate community access for MJD research
- Facilitate education sessions throughout the community
- Weekly communication with MJD clients and families
- Assistance with prioritisation of research and projects based on the family's needs and desires

Manager, Community Services - Simone McGrath

Simone joined the MJD Foundation in June 2010 and is the MJD Foundation's Manager of Community Services and is 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 is responsible for the establishment and operation of our 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.

Administration - Kathy Massey

Kathy is responsible for all foundation related travel bookings and coordination, as well as organising respite trips for MJD sufferers and their families.