MJD Foundation

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

We focus our activities on Groote Eylandt and Bickerton Island, and also provide services to other affected areas of the NT.

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

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

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.

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

Some of our projects:
• 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

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

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

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 
• Medical Protocols 
• Holiday of a lifetime for Rose

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.

Chairperson - 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.

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 individuals living with MJD 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.

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 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 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.

Director, Research and Community Services - 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 overall delivery of the MJD Foundation's services, as well as all research and education projects. Click here for a message from Libby.

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

Manager, Community Services - Simone McGrath

Simone joined the MJD Foundation in June 2010 and is the MJD Foundation's Manager of Community Services (reporting to Libby Massey) 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 individuals living with MJD 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.

Click here for Simone's Healthy Stories interview.

Project Manager - Angela Chesters

Ange joined the MJD Foundation in January 2011.  Reporting to Nadia Lindop, Ange is responsible for the management of the MJDF's grants, as well as the day to day management of key projects for the MJDF to ensure their successful completion.

For each project that is undertaken by the MJD Foundation, Ange is responsible for:
- development of project plans
- communication of the plan to project members
- tracking and reporting each project
- documenting the outcomes of the project
- liaising with key stakeholders for each project
- supporting team members with project activities

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 Simone 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

Travel and Respite 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.

Manager, Educational Resources - Roslyn Kempton

Ros was employed by the MJD Foundation in late 2010 initially to assist with some carer needs for our clients, but then in the role of Manager, Education Resources.

Ros will work with Libby Massey to compile appropriate educational resources for supporting carers of those with MJD in the following sectors:
- Family Carers
- Community Service Sector - residential care
- Professional Health Care Sector

Ros will also partipate in the planning around long term delivery methods for the MJD Foundation to be able to reach the maximum number of participants given our capacity.

Manager, Alternative and Augmentative Communication (iPad Project)

Sheri joined the MJD Foundation in late 2010 and is responsible for the iPad rollout to our MJD clients.  In particular, Sheri's duties include:
- set up of trial iPads and association applications
- work extensively with MJD clients on enabling the client to communicate as effectively as possible
- document methods, processes and outcomes
- recommend new technologies, software etc