MJD Foundation

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.

Bryan Massey (OAM) and Kathy Massey (OAM)

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.

Director / 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.

Director / Vice-Chairperson - Gayangwa Lalara OAM

Gayangwa is a Warnindilyakwa woman of Groote Eylandt, she is 74 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.

Director - 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.

Director – 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.

Director/Treasurer - Janice Oake

Janice Oake is the Board Treasurer, and previous to that was a MJDF Finance Subcommittee member from 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.

Director - Jennifer Cullen

Jennifer Cullen joined the MJD Foundation board in February 2017.

Jennifer Cullen is an Adjunct Associate Professor with James Cook University and Griffith University and CEO, Synapse Australia Limited. 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 Aboriginal and Torres Strait Islander Australians with complex neurocognitive disabilities, including FASD. Jennifer is a descendent of the Bidjara and Wakka Wakka people. Jennifer's specialties are Health economics, not for profit capability, Professional Development and Mentoring.

Director - Prof. Patrick Keyzer

Dr. Patrick Keyzer, born in Sydney and living in Melbourne, joined the MJD Foundation in 2019. Patrick is a Research Professor in Law and Public Policy at La Trobe University.

Chief Executive Officer - Nadia Lindop OAM

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 20 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 Education - Libby Massey OAM

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 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.

Senior Cultural Advisor - Gayangwa Lalara OAM

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

Operations Manager - Morag MacLennan

Morag joined the MJD Foundation 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. This includes the logistics around travel, procurement, office management, fleet management, laptops/phones, merchandise and volunteer management.

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

Manager, Community Services and Occupational Therapist  - Kate Pope

Kate joined the MJD Foundation in March 2015 as a volunteer. In March 2016, she took on the role as Manager, Community Services for Groote Eylandt and Ngukurr. After taking maternity leave in 2017, Kate returned in 2018 to take on the lead role for the NDIS Groote Eylandt Local Support Group.  Kate also provides Occupational Therapy to MJDF's clients on Groote Eylandt.

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

Manager, Community Services - Nick Kenny

Nick is the Manager, Community Services for the Ngukurr community.

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

Therapy Program Manager - Alison Grootendorst

Ali joined the MJD Foundation team in July 2016 as a Manager, Community Services for Darwin and Elcho Island based clients.  Ali now leads the MJDF Therapy/Clinical team. 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.

Manager, Community Sevices - Jacob McCue

Jake joined the MJD Foundation in 2017 and is a Manager, Community Services for families living in the Groote Eylandt, Central Australia and Nhulunbuy regions.

Jake also fulfills the role of Wellbeing officer for the MJD Foundation.

Jacob has a Masters of Social Work and was previously employed as a Disability Coordinator in the Central Australia and Top End regions of the NT. Jacob also has prior experience working in family and youth support services in regional NSW.

PhD Candidate - Jen Carr

Jen is a PhD student working together with families with MJD and the MJD Foundation to help find the best ways to keep people with MJD walking and moving around and living a good life.

Jen completed a Bachelor of Physiotherapy with first class Honours at James Cook University in Townsville (2009) and a Graduate Diploma in Neurological Rehabilitation (2014). Jen has spent most of her career working in Neurological Rehabilitation, first at the Townsville Hospital, followed by the Gold Coast as Senior Physiotherapist in Rehabilitation. Jen has also worked in remote Aboriginal and Torres Strait Islander communities in Cape York in 2014, to develop and evaluate a rehabilitation service for stroke survivors.

Jen has been involved in research throughout her career and published research on community participation following spinal cord injury in 2016. Jen was awarded a full time PhD scholarship from JCU in 2017 to undertake this research alongside families with MJD. Jen and the research team have since secured $114,760 from the Lowitja Institute to fund this research.

Aboriginal Community Worker / Co-Researcher - Joyce Lalara

Joyce Lalara joined the MJD Foundation in February 2011 as a Community Worker, and her role included:

• translation for families to understand research and medical concepts
• visiting families 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

SCA7 Project Manager - Mark Kilpatrick

Mark initially made contact with the MJD Foundation while working in North East Arnhem Land. He was later employed by MJDF as a Manager, Community Services on Groote Eylandt throughout 2014 and 2015.

In 2018 and 2019, Mark assisted MJDF with a Scoping Study into Spino-Cerebella Ataxia type7 (SCA7) in the Cairns region, and in 2020, he became the SCA7 Project Manager based in Cairns.

He is a Registered Nurse, with a long-term commitment to Aboriginal health, and has extensive experience working in hospitals, primary health care, community health, and in remote communities.

Leah grew up on Groote Eylandt and in Darwin, completing her Bachelor of Occupational Therapy in 2007. Over the last 13 years, Leah has worked as an OT in NSW and across Australia in both community and acute settings (including Darwin, QLD and Alice Springs).

Leah returned home to the Territory in 2019, and prior to joining MJD, worked at the Royal Darwin Hospital. Leah has recently completed the Effective Leadership in Health program via NSW Health (in partnership with the Clinical Excellence Commission (CEC) and Wollongong University). She is passionate about living and working back in the NT.

Wyam has a Bachelor Degree in Nursing from Queensland University of Technology (QUT). She has a background in Mental Health, and her previous place of employment was the Prince Charles Hospital in Brisbane.

After taking some time out of the workforce to be a stay-at-home mum, Wyam is very excited to return to work in her new role with the MJDF, supporting MJD clients and their families.

Aboriginal Community/Health 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

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 and working with families to help those with MJD
• supporting the MJD Therapy program by helping with hydrotherapy and other activities

Manager, Community Sevices - Jill Turner 

Jill started with the MJD Foundation in September 2020 as a Manager, Community Services for families living on Groote Eylandt.

Originally from Sydney, Jill moved to the NT in 2017 for a role at the Royal Darwin Hospital. She completed her training as a Registered Nurse in 2010 and has extensive experience in Neuroscience in the intensive care setting. Jill also has developed skills in initial and early stage rehabilitation processes, as well as assisting physiotherapists, occupational therapists and speech pathologists with initial assessments and patient safety. She completed a Graduate Certificate in Public Health in Nov 2020.

Jill has a passion for Indigenous health, and prior to joining the MJDF she worked as a nurse at Danila Dilba, where she first encountered and cared for clients with MJD.

Aboriginal Community Worker - Steve Wurramara

Steve (Bakala) 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.

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

Aboriginal Community Worker - Nancy Raggett

Nancy is a proud Luritja women from Central Australia and currently lives in Papunya community. Nancy joined the MJD Foundation in October 2018 and her role includes:

• Cultural guidance and translation supports for our Luritja speaking clients and family members in Central Australia
• Community access supports for family living in Supported Accommodation in Alice Springs

Olga joined the MJD Foundation in February 2019, and her role includes:

• Translation for families to understand research and medical concepts 
• Working closely with researchers who visit Ngukurr
• Being a key contact for MJD families living in Ngukurr
• Supporting MJD clients to attend medical and other specialist appointments
  

Alongside her role with the MJD Foundation, Olga also works as a fulltime administrator at the Ngukurr clinic.

Genealogist - Janine Ryan

Janine joined the MJD Foundation in late 2012 to focus on updating the MJD family trees across the communities in which there are Aboriginal Australians living with MJD. Her work helps to plan for future needs in these communities, contribute to research, genetic counselling and education, and apply for much needed funding.

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

Billie started with the MJD Foundation in March 2020 as a Darwin-based Client Services Assistant. In her role, she supports the Client Services Coordinator in the management of all NDIS procedures.

Billie has an administration background, with her previous role being as a receptionist at a remote community clinic in Central Australia. She is currently completing her Certificate III in Business with Charles Darwin University as an apprentice.

Aboriginal Community Worker - Gwen Lalara

Gwen Lalara has had significant involvement with the MJDF for many years, however she joined the MJDF team as Community Worker in 2019. Her role includes:

• translation for families to understand research and medical concepts
• visiting and working with families to help those with MJD
• working with Gayangwa Lalara to provide cultural advice to other members of the MJD Foundation team
• assisting with reasearch work on Groote Eyalndt and Bickerton Island. 

Vicky is also undertaking a Certificate II in Community Health Research to better equipped to assist in the delivery of MJDF's research programs (e.g. Physiotherapy, communication groups, individual therapy programs), as well as to aid in the translation/interpretation of research methods and outcomes with MJD clients and families.

Project Manager & Family Support Worker - Rebecca McCue

Rebecca started with the MJD Foundaton as a FSW in June 2018 on Groote Eylandt. She transfered to Cairns in January 2020 and now works as a Project Manager and FSW.

Prior to the MJDF, Rebecca has worked in various roles, including as a Disability Support Worker, an Environmental Consultant and as a Free-lance Writer. Rebecca has a Bachelor of Environemtnal Science, and is due to complete a Bachelor of Arts (Linguistics major) and a Masters of Secondary Teaching in 2021.

Aboriginal Community/Health Worker - Loretta George 

• Kriol translation for families to understand research and medical concepts
  
• visiting and supporting clients with MJD
  
• co-researcher on a number of projects, inluding sleep and NDIS research
  
• providing cultural advice to other members of the MJD Foundation team
  
• cultural advice and content for MJDF's Genetic Program 

Aboriginal Community/Health Worker - Elah Yunupingu

Elah joined the MJD Foundation in April 2017, and his role includes:

• Translation for Gove and Elcho Island families to understand research and medical concepts
• Supporting clients in Darwin and occasionally in Gove
• Supporting clients to go out hunting 
• Developing new and engaging ways to better support the MJDF families 
  

In 2020, Elah qualified as an Interpreter/Translator with NAATI (which is the Nationally accredited qualification).

Aboriginal Community Worker - Tommy Weetra 

Tommy started with the MJD Foundation as a casual staff member in April 2017 and became a full-time, permanent staff member midway through 2018. Tommy works in the Support Team, and his role includes: supporting clients to attend appointments, collecting and delivering goods from barge and freight services, preparing for On Country trips, vehicle maintenance and airport transport support. 

Prior to working with the MJDF, Tommy worked at an Aboriginal Hostel in Darwin for many years and in various roles, including as an Assistant Manager

Special Projects Officer - Kathy Massey OAM

Kathy has been with the MJD Foundation since 2008.

Kathy was the travel officer until 2017, where she has moved to a Special Projects Officer role. She is currently working on an important project completing a photo and oral history of families with MJD from Groote Eylandt.

This written history project was launched in 2018 as part of the MJDF's 10 year birthday celebrations.

Senior Administrative Officer - Stacey Reilly

Stacey commenced with the MJD Foundation as a Senior Administrative Officer in February 2020. As a part of the Support Team, her role is to support the Operations Manager with the coordination of travel logistics, fleet management, laptops/phones, merchandise and other office operations.

Stacey has lived in Darwin for 30 years and has extensive administration experience. Prior to working for the MJD Foundation, she worked as an Administrative Officer in disability services. 

Client Services Coordinator - Mel Asendorf 

Mel started with MJDF as the Client Service Coordinator in March 2019. As a part of the Support Team, her role in the organisation is to manage all NDIS procedures.

She has a strong administrative background with previous roles including: Cashier at BankSA, Employment Consultant at Careersystems, and Contract Manager of the Central Australian CDEP Program with ATSIC/ICC. Over the last ten years Mel has worked at Bunnings in SA and NT, managing all aspects of administration, finance and safety compliance.

Procurement/Admin Officer - Tina Hebblewhite

Tina is responsible for the purchase of equipment and services for clients as well as ensuring the equipment arrives safely in the often very remote locations that it gets delivered to.  Tina also provides general administrative support to the CEO and other members of the MJDF Team.

Tina has been with the MJD Foundation since 2010.

Tina's husband worked as CEO for the Anindilyakwa Land Council for many years, Tina has a strong connection to Groote Eylandt and its people

Finance Manager - Zeng Jones

Zeng joined the MJD Foundation in April 2010 and manages MJDF's Finance team including all of the MJDF's accounts, ensuring accurate and up to date financial books for the MJDF.

Zeng completed a Bachelor in Chinese Literature in China. Thereafter, she worked with a Chinese Government Agency for 5 years before starting a self-operated importing business.

After migrating to Australia in 1998, Zeng completed an Advanced Diploma in Accounting and soon after commenced working with the MJDF. Zeng has extensive experience in finance and accounting, and across various industries. She has also worked as an Assistant Accountant for an accounting firm, as a Finance Administrator for Lexus Australia Sales & Marketing team, and as a Bookkeeper for a youth art organisation.

In 2020, Zeng celebrated ten years with the MJDF.

Client Services Support Officer - Diana Warford 

Diana started with the MJD Foundation in September 2020 as a Darwin-based Client Services Support Officer. As a part of the Client Services Team, she supports the Client Services Coordinator in the management of all NDIS procedures.

Diana has over 4 years' experience in administration, and she completed a Certificate II in Business Administration in 2018 whilst working as a trainee at Carpentaria, a disability support organisation. During her 3.5 years with Carpentaria, Diana's role was an Administration Support Officer, later transitioning into the Receptionist role at Harry's Place Administration Building.

Other Special People

• Genetics 101 - Genetics in General Practice presentation (Part 1)
• What is MJD? Genetics in General Practice presentation (Part 2)
• Neurological Assessment per Stage of Disease (SARA DVD)  
• Women's Genetic Education DVD 
• SARA Ataxia Rating DVD 
• Genetic Education Clinic education Flyer 
• Development of a Genetic Counselling Checklist
• Performing neurological SARA assessments 
• Helped the MJDF to rollout to new communities =>Ngukurr
• Countless visits to communities providing Genetic Education Sessions
• Founding member of the MJDF Research Advisory Committee