MJD Foundation

About Us

What We Do | Board/Staff | Our Background | Positions Vacant

What we do

Click here for our Documentary "No Shame, No Blame... Just Hope"

Download our Frequently Asked Questions document.

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Faces of the MJD Foundation

The MJD Foundation is a charity, established in 2008 to improve quality of life for Indigenous Australians and their families living with Machado Joseph Disease in Arnhem Land and beyond.

We were founded on Groote Eylandt, and have now expanded our services to other affected communities in the NT and QLD.

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

Genetic Health Qld conducting a genetic counselling session

Education/Training
Current initiatives in this area include:
• Provision of genetic education to families/community 
• Provision of genetic education to health professionals
• Working within communities to understand MJD
• Training care workers and family carers

Some of our projects:
Genetic Ed - families/community
Genetic Ed - resources for health professionals
In-Services and Education Sessions
Conference Speakers
Young Men's Camp
Genetic Booklets in English and Anindilyakwa 
Carer Education Progam 
Wheelchair Prescription Workshop 2012  
Adult Learners' Week 
• Women's Camp - Groote Eylandt  
• "Living with MJD - A Guide for all Australians"  
• DVD - 'Saltwater & Smiles' for carers  
• DVD - 'MJD Family Business - Messages for Women'
• DVD - 'MJD Family Business - Messages for Kids"
• Vincent Aviation - Safe Lifting training 
• MJD training to Medical students 
MJD SARA client assessment DVD 
• Wheelchair Prescription Workshop 2014  
• DVD: MJDF Proper Approach 
• DVD: MJDF Clinical Approach 

Research

Research
Current projects are based on seeking practical solutions to help individuals living with MJD and their families.

Some of our projects:
Sleep studies
DNA Haplotyping
Speech and Swallowing research
Urinary Incontinence research 
Zebrafish MJD Treatment 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.

On 28/29 August 2015 the MJD Foundation held the first International MJD Conference in Australia =>More

Jane fishing from her beach wheelchair

Trikes

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

Download our "Assistive Technology (Equipment)" medical protocol here.

Some of our projects:
• Angurugu Library Ramp
• 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
• Angurugu Women's Centre ramp
• Aircraft Wheelchair Lifts
Wheelchair scales
Natalya's "Bedroom Blitz"
Trikes
Apple iPads 
Electric Wheelchair for Jock
Bath Chair 
Elcho Island Aircraft Wheelchair Lift
• Aisle Wheelchairs

 Tv Ad

 

National Speech Pathology Conference

Advocacy
Advocacy activities undertaken by the MJD Foundation include:

• Bi-partisan approach that remains politically unaligned. 
• Policy advocacy on behalf of MJD clients 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 clients and 
• Fundraising ie encouraging individuals, corporations and governments to donate funds towards supporting the ongoing work of the MJDF. 

Some of our activities:
• TV Advertisement
• Submissions to government (eg TIMES)
• Letters of support re: housing, employment
• Supporting employers with MJD client plans
• Newsletters
• Annual Reports
• Magazine articles
• Media articles and media interviews
• Speaking at Conferences
• Speaking at fundraising events
• In-services/Education 
• National Disability Awards finalist 2012
DisabilityCare Australia - Disability Audit 2013 
• National Disability Strategy - Indigenous Working Group participation
• National Disability Awards winner 2015 

 Aircraft Wheelchair Lift

  Hydrotherapy

Improved Services
• MJD Therapy - "Staying Stronger for Longer"
• Better transport options for MJD clients
• Improved resources for Health professionals
• Increased care options
• Social and Emotional Wellbeing Program
• "Holiday of a lifetime" for clients
• "Kin Connection" trips for those in permanent care to stay close to their family and community
• Carer Support Program 

Some of our projects:
• 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
• Gwenda's holiday to QLD
• ICV - Volunteer partnership
• Aircraft Wheelchair Lifts for improved travel
• Umbakumba to Naked Pools 45km bike ride
• Hydrotherapy "Water Dancing" program
• Social and Emotional Wellbeing
• Medical Protocols for the treatment of MJD
• Jamie and Lisa's holiday to Cairns
• Kin Connection trip for Gabriella 
• Neurological Assessment medical services
• Gabriella's holiday of a lifetime to Sydney 
Our Story - Young Men's filming project 
Holiday of a lifetime for Rose
• Kids Makin' Beats - Hip Hop workshops
Backyard Blitz on Groote Eylandt 
Wheelchair Prescription Workshop 
NT Libary partnership - Cameras keep rolling 
• Rowena's Holiday of a Lifetime 
• Carers' Week at Ngukurr 
Carers' Week on Groote Eylandt 

Patrons

Prof Garth Nicholson

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 traveller, 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.

In recognition of his past and ongoing valuable contribution to the MJD Foundation, Professor Garth Nicholson was appointed as a Patron of the MJD Foundation in September 2010.

The dictionary definition of a Patron is "one that supports, protects, or champions someone or something".

  • Prof Nicholson strongly "supports" the MJD Foundation and our clients through his contribution as a Board member since our inception in 2008, the support he has provided leading to the establishment of the MJD Foundation, and his ongoing support through the Medical Protocols Project and Research Advisory Committee. 
  • Prof Nicholson "protects" individuals and families by offering hope in developing a treatment for Machado Joseph Disease. 
  • Prof Nicholson "champions" by highlighting the work of the MJD Foundation to his friends and peers.
Kathy and Bryan Massey

Bryan Massey (AOM) and Kathy Massey (AOM)

Bryan and Kathy 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 their last 8 years on Groote they managed the Mungkadinamanja Aged and Disability Services for Angurugu and Bickerton Island communities. The formation of the MJD Foundation in 2008 was a long held dream of both Bryan and Kathy. Bryan and Kathy were recognised for their life's dedication to the people of Groote Eylandt in 2010 by being awarded AOMs. Kathy was a founding Board Director from 2008 to 2017.

Bryan has been a volunteer with the MJDF since it commenced in 2008, but between August 2013 and March 2014 Bryan held the staff position of Manager of Community Services for Groote Eylandt. He ‘kept the seat warm' between Simone's departure and Mark's commencement.

Board & Staff

Board Members

Neil Westbury

Chairperson - Neil Westbury PSM

With over 40 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.
Vice-Chairperson - Gayangwa Lalara

Vice-Chairperson - Gayangwa Lalara

Gayangwa is a Warnindilyakwa woman of Groote Eylandt, she is 72 years old, and Machado Joseph Disease 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 40s.  She was the primary carer for two of her sisters’ children for over 15 years. Now the third generation of her family is sick - her 21 year old niece passed away in 2014, and she has nieces, nephews and grandchildren with the disease.

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 proud champion is an encouragement to the many people she meets and her quiet dignity and perseverance for them is an inspiration.

ALC Representative - Tony Wurramarrba

ALC Representative - Tony Wurramarrba AO

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.

Jenny Baird

Family Representative – Jenny Baird

Jenny Baird was the primary carer of her husband, Warren Lalara who lived with MJD for 18 years before passing away in September 2010. Jenny knows only too well the enormous burden placed on carers of people with MJD. Warren's care needs were intensified and he resided in a nursing home in Darwin for several years.

Jenny and Warren have 2 children and 3 grandchildren. Both of their children have MJD and the question remains how this disease will affect their grandchildren.

Jenny is a past President of Carers NT. This advocacy role 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.

Neil Westbury

Policy Advisor – Neil Westbury PSM

With over 40 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.
 Janice Oake

Treasurer - Janice Oake

Janice Oake has been a MJDF Finance Subcommittee member since 2012, providing advice to the Board, input into the MJDF's investment approach, and assisting with budgets and cash-flow analysis. She accepted the voluntary appointment of Board Director/Treasurer in April 2014.
With over 25 years professional experience working in finance and business consulting, Janice has:

  • extensive knowledge of Australian statutory accounting standards;
  • a sound knowledge of financial investment strategies;
  • extensive expertise in business operations including finance, legal/insurance, human resources and policy development.
Olga Havnen

Olga Havnen

Olga Havnen joined the MJDF board in February 2017.

Olga Havnen is the CEO of Danila Dilba Health Service in Darwin. Olga has held a range of senior public and non-government sector roles in her long career in Indigenous Affairs, including NT Coordinator General for Remote Services, Head of Aboriginal and Torres Strait Islander Strategy, Australian Red Cross, Deputy Director Northern Land Council and Senior Policy Advisor Department of the Chief Minister, NT. Olga grew up in Tennant Creek and is the daughter of Aboriginal educator Peg Havnen.

Jennifer Cullen

Jennifer Cullen

Jennifer Cullen joined the MJDF board in February 2017.

Jennifer Cullen is an Adjunct Associate Professor with James Cook University and CEO of Synapse in Queensland and NSW. Jennifer has over 26 years' experience in disability and aged care services and was appointed in 2013 to the NDIS Independent Advisory Council as the Queensland Member and was appointed in 2016 to the National Disability and Carers Advisory Council as a Member.
She leads a range of research and projects that focus on supporting Indigenous Australians with complex neurocognitive disabilities, including FASD. Jennifer is a descendent of the Wakka Wakka people. Jennifer's specialties are Health economics, not for profit capability, Aboriginal and Torres Strait Islander Issues, Professional Development and Mentoring.

Staff

Nadia Lindop

Chief Executive Officer - Nadia Lindop

Before the establishment of the MJD Foundation in 2008, Nadia spent 20 years in the corporate world where she 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 15 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 co-founded the MJD Foundation with Libby Massey and is responsible for the day to day administration, finances and management of the MJD Foundation, and reports to the Board.

Libby Massey

Director, Research and Education - Libby Massey

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.

Libby is responsible for the MJDF's research and education projects.

Melinda FajermanDirector, Community Services (Team Lead) - Melinda Fajerman


Melinda was promoted to the position of Director, Community Services in Feb 2017, after being part of the MJD Foundation team since Feb 2015 as Manager of Community Services for Elcho Island and Gove Peninsular.

Mel is responsible for the day to day supervision and delivery of supports to the MJDF's clients and families and reports to the CEO (Nadia Lindop).

Melinda is a Social Worker and came to the MJDF with many years of community development experience.

Gayangwa Lalara

Senior Cultural Advisor - 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:

  • Cultural guidance and support to MJDF Board and Staff
  • 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
Morag MacLennan

Operations Manager - Morag MacLennan

Morag joined the MJDF team in November 2015 as Operations Manager.

Reporting to the CEO, Morag runs the day to day operations of the organisation ensuring everything is running smoothly.

Morag is based in Darwin at the MJD Foundation office at 5/1 Caryota Court, Coconut Grove.

Kate Pope

Manager, Community Services - Kate Pope

Kate joined the MJD Foundation in March 2016 as Manager of Community Services (reporting to Libby Massey) for Groote Eylandt and Ngukurr. Kate is based on Groote Eylandt and has also been volunteering with the foundation since September 2015.

In addition to supporting the MJD Foundations core activities across research, education, improved services and advocacy across the region, Kate together with Nick Kenny (physiotherapist) is responsible for the operation of our MJD Therapy Program "Staying Stronger for Longer". The MJD Therapy program on Groote Eylandt incorporates therapeutic interventions such as hydrotherapy, physiotherapy, speech/swallowing therapy, hand therapy with trips on country.

Kate is a nationally registered Occupational Therapist and comes to MJD with a background in community rehabilitation and palliative care.

Nick Kenny

Manager, Community Services - Nick Kenny

In 2017, Nick is taking on the lead MCS role for the Ngukurr and Groote communities whilst Kate is on Maternity leave.

Nick also provides physiotherapy services to MJDF clients and their carers on Groote Eylandt and other Arnhem/NT Gulf communities through his company Active Performance.

South32 funds this important service to MJDF clients as part of their Sponsorship agreement.

Watch this video of Nick talking about physio sessions on Groote Eylandt

Desiree LaGrappe

Manager, Community Services / Research Officer - Desireé LaGrappe

Desireé joined the MJD Foundation in September 2014 and is based in Darwin. She holds two postions:

  • Manager, Community Services providing urban support to clients visiting Darwin 
  • Research Officer, supporting the MJD Foundation's core activity of research

Desireé is a Registered Nurse (from the USA) and also has a global health and medical research background. Her passion is community health.

In this video she talks about the symptoms of MJD from a nursing perspective such as pain and pressure care - View here

Ali Beckwith

Manager, Community Services - Ali Beckwith

Ali joined the MJD Foundation as a new graduate Occupational Therapist in February 2014 as Project Manager (reporting to Nadia Lindop).

In 2015, Ali was promoted to Manager, Community Services, and is the case manager for the MJDF's North QLD and Oenpelli clients.

Ali also supports the MJD Foundation's core activities across research, education, equipment, improved services and advocacy in North QLD. She also leads several of our technology projects utilsing the iPad to support clients' communication needs.

In this video she talks about communication strategies for clients with MJD - View here

    Ali Grootendorst

    Manager, Community Services - Alison Grootendorst

    Ali joined the MJDF team in July 2016 as a Manager, Community Services for Darwin and Gove Peninsular based clients.  Ali is based in Darwin.

    Ali is a nationally registered Physiotherapist (graduating with honours) with a background in neurological rehabilitation, and got to know quite a few clients living with MJD whilst in her previous role at Royal Darwin Hospital as part of the rehab team. Ali is also currently completing her Masters in Public Health, and has a particular interest in health promotion.

    Joyce Lalara

    Aboriginal Community Worker - Joyce Lalara

    Joyce Lalara joined the MJD Foundation in February 2011, and her role includes:

    • translation for families to understand research and medical concepts
    • visiting families with Ros & Mark and working with families to help those with MJD
    • supporting the MJD Therapy program by helping with hydrotherapy and other activities
    • working closely with researchers who visit Groote Eylandt and Bickerton Island
    • working with Gayangwa Lalara to provide cultural advice to other members of the MJD Foundation team
    Julie Gungunbuy Wunungmarra

    Aboriginal Community Worker - Julie Gungunbuy Wunungmarra

    Julie joined the MJD Foundation in August 2013, and her role includes:

    • translation for Elcho Island families (both on Elcho Island and in Darwin) to understand research and medical concepts
    • visiting Elcho Island families with Libby and Mel and working with families to help those with MJD
    • supporting the MJD programs/projects being rolled out to Elcho Island
    • working closely with researchers and our genetics advisor who visit Elcho Island
    • provide Yolngu cultural advice to other members of the MJD Foundation team
    Brett Mamarika

    Aboriginal Community Worker - Brett Mamarika

    Brett Mamarika joined the MJD Foundation in August 2012, and his role includes:

    • vehicle maintenance
    • MJDF driver on Groote Eylandt
    • Wheelchair and other equipment maintenance
    • visiting families with Ros & Mark and working with families to help those with MJD
    • supporting the MJD Therapy program by helping with hydrotherapy and other activities
    Steve Wurramara

    Aboriginal Community Worker - Steve Wurramara

    Steve Wurramara joined the MJD Foundation in February 2012, and his role includes:

    • cultural leader, in particular leading filming projects on Groote Eylandt
    • iPad guru

    Follow this link to see Steve's award for his work - received in June 2013.

    Bronwyn Daniels

    Aboriginal Community Worker - Bronwyn Daniels

    Bronwyn joined the MJD Foundation in February 2015, and her role includes:

    • Kriol translation for families to understand research and medical concepts
    • visiting families in Ngukurr with Ellen and working with families to help those with MJD
    • working with researchers/medical specialists who visit Ngukurr
    • providing cultural advice to other members of the MJD Foundation team

     

     Photo
    coming
    soon

    Aboriginal Community Worker - Wendy Maymuna Yunupingu

    Maymuna joined the MJD Foundation in October 2014, and her role includes:

    • translation for families to understand research and medical concepts
    • visiting families with Melinda in Yirrkala (and surrounds) and working with families to help those with MJD
    • working closely with researchers and medical specialists who visit Yirrkala and surrounds
    • providing cultural advice to other members of the MJD Foundation team
    Kathy Massey

    Travel Coordinator - Kathy Massey

    Kathy has been with the MJD Foundation since it commenced in May 2008.

    As well as her Board role, Kathy is responsible for all MJDF related travel bookings which includes travel for Board members, staff, visiting researchers and medical staff.

    Kathy also plans and coordinates Holiday and Kin Connection trips for MJD clients and their families.

    Janine Ryan

    Genealogist - Janine Ryan

    Janine joined the MJD Foundation in late 2012 to focus on updating the MJD family trees across the communities in which their are Indigenous Australians living with MJD.

    Janine grew up on Groote Eylandt and has a strong understanding of Aboriginal kinship. Janine is also a journalist and social worker.

    Tina Hebblewhite

    Admin Assistant, Procurement Officer - Tina Hebblewhite

    Tina is responsible for the purchase of equipment for clients and ensuring the equipment arrives safely in the often very remote locations that it gets delivered to.Tina also provides general administrative support to the Executive Officer.

    Tina's husband worked as CEO for the Anindilyakwa Land Council for many years so Tina feels a strong connection with Groote Eylandt.

    Zeng Jones

    Bookkeeper - Zeng Jones

    Zeng joined the MJD Foundation in 2009 and keeps the financial books for the MJDF up to date.

    Other Important People

    John Macmillan

    Geneticist - John MacMillan

    We are devastated that Associate Professor John MacMillan lost his battle with cancer in December 2014 aged only 55.  John has been with us since 2008, and his work with the MJD Foundation was ground-breaking.  He was a wonderful man, and we will miss him. Our thoughts are with John's wife Sarah and his children Ewen, Lucy and Kieran.

    The MJD Foundation intends to continue John's genetic education work in his name.  If you would like to make a tax deductable donation to the "John MacMillan Indigenous Australian Genetic Education Program" please follow this link and note "John MacMillan"in the "special message" field.

    Read messages for John here.

    Some of the important work that John did with the MJDF is listed here:

    As part of John's journey with the MJDF, he was awarded the prestigious Rohan Nicks Russell Drysdale Fellowship.

    The Weekend Australian published this article - Vale: John MacMillan - on 31st January 2015.

    Our Background

    1994 - The Gene for Machado Joseph disease is discovered by Japanese Researchers
    1995 - NT Health Department Study conducted by Dr Tim Burt confirms "Groote Eylandt Syndrome" is MJD
    1999 - Development of a local action plan (NT Dept H&CS)
    2001 - Care Guidelines Established (NT Dept H&CS)
    2004 - East Arnhem Disability Report into Impact of MJD in East Arnhem land communities (NT Dept H&CS &Anglicare NT) – Libby Massey
    2005 - Establishment of Machado Joseph Disease Co-coordinator Position (NT Dept H&CS)
    2008 - Establishment of the Machado Joseph Disease Foundation (Funding commitment by Cth Dept Fahcsia and the Anindilyakwa Land Council)