The MJD Foundation Team
Board & Staff I Other Special People I Join our staff
Patrons
 | Professor Garth Nicholson 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".
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 | 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. |
Board & Staff
Board Members
 | Director / Chairperson - Neil Westbury PSM With over 40 years professional experience working in Indigenous affairs and public sector management Neil has:
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 | Director / Vice-Chairperson - Gayangwa Lalara OAM 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 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. 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. |
| Director – Jenny Baird 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.
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 | 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. |
Staff.
 | Chief Executive Officer - Nadia Lindop OAM 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. Libby is responsible for the MJDF's research and education projects. |
 | Director, Community Services - Melinda Fajerman
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:
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 | 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 - Jess Meagher Jess started with the MJD Foundation as a Darwin-based MCS in April 2018. She mostly works with Darwin urban families and sometimes with families in Nhulunbuy and Elcho Island. Jess moved to Darwin one year prior to starting with the MJDF and was pleased to finally find a role that ticked all the boxes. Prior to moving to Darwin, Jess worked as a Domestic Violence Counsellor in QLD. Although she has not previously worked directly in the disability sector, her experience to date has provided her with a thorough understanding of the advocacy and support required for marginalised people with complex needs. |
 | 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 |
 | Manager, Integrated Services (Research, Education, Clinical Services) - Desireé LaGrappe Desireé joined MJDF in September 2014. She is the Research Officer, supporting the MJDF's core activity of research. Formerly, she jointly worked in the role of Manager, Community Services supporting clients in Darwin and Elcho Island. Prior to joining the staff, Desireé volunteered her time to care for clients returning home on 'kin-connect' trips. Desireé is a nationally Registered Nurse (initially qualified in the USA) and also has a global health and medical research background. Her passions are community health and health equity. She completed a degree in public health nursing and supported the MJDF to organise the 2019 International MJD Research Conference, which was held in Washington, DC USA. Desireé returned to the MJDF in February 2020. In this video, she talks about the symptoms of MJD from a nursing perspective, such as pain and pressure care - View here |
 | 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. |
| Darwin Community Services Team Leader Liz started working with the MJD Foundation as a Darwin-based MCS in March 2018, and she supports clients in both Gunbalanya and Darwin. Liz is now the Team Lead for the Darwin Community Services team. Liz is originally from rural NSW but has lived on and off in parts of the NT for the last four years, including Katherine and Darwin. She has a Bachelor of Physiotherapy & Masters of Public Health, and for the past ten years, she has worked in disability and child development both in Australia and abroad. Almost five of these years were spent in Mongolia and Tanzania, working with local staff and therapists to support children with disabilities at school and within the broader community. Liz has also taught in the School of Community Health at Charles Sturt University in the Physiotherapy, Health and Rehabilitation programs. She is undertaking a Masters of International Public Health (Indigenous health stream). |
| 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:
In 2017, Joyce was promoted to the role of Aboriginal Co-Researcher and is working alongside PhD candidate Jen Carr to research physical activity and what keeps people with MJD strong. |
| Manager, Community Sevices - Leah Clarke Leah started working with the MJD Foundation as a Darwin-based MCS in February 2020, and she supports clients in both Gunbalanya and Darwin. 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. |
| Manager, Community Sevices - Wyam Morris Wyam joined the MJD Foundation in March 2020 as a Cairns-based Manager, Community Services.
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:
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 | Aboriginal Community Worker - Brett Mamarika Brett Mamarika joined the MJD Foundation in August 2012, and his role includes:
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 | Aboriginal Community Worker - Steve Wurramara Steve (Bakala) Wurramara joined the MJD Foundation in February 2012, and his role includes:
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:
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 | 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:
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 | Aboriginal Community Worker/Co-Researcher - Olga Daniels Olga joined the MJD Foundation in February 2019, and her role includes:
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. |
 | Client Services Assistant - Billie Russo 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. |
 | MJD House Program Manager - Caitlyn Morrissey Caitlyn started with MJDF in March 2020 as the MJD House Program Manager. Prior to joining MJDF, Caitlyn was the Administrative Manager of Harry's Place (a shared community services hub in Darwin owned by Carpentaria). She arrived at MJDF with extensive management/coordination experience, plus remote community experience, having lived and worked in Maningrida for several years. |
 | 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:
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| Aboriginal Community Worker - Vickerina Nganjmirra Vickerina commenced working with the MJDF as a Darwin-based Community Worker in August 2019. Vickerina is a vital support to MJDF's Darwin-based clients, as well as MJD clients visiting Darwin's MJD HOUSE program (the MJD HOUSE program is a Wellness hub with the aim of keeping our clients/families stronger for longer so that they can remain living and cared for in their communities). 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. |
 | Family Support Worker, Therapy Assistant - Gillian Edmiston Gillian started with the MJD Foundation as a Darwin-based Family Support Worker and Therapy Assistant in February 2019. Gillian has a background in aged care, working in high and low care facilities in rural Victoria. Her previous role was with Anglicare NT, where she worked as a Disability Support Worker. This is where Gillian first encountered MJDF, as her role involved supporting MJD clients to access Darwin city and to visit their home communities for extended trips. Gillian is midway through a Bachelor of Nursing as well as a Diploma Yolngu Studies at Charles Darwin University. She holds a Certificate III in Aged Care and Home and Community Care. |
 | Aboriginal Community/Health Worker - Loretta George Loretta started with the MJDF in 2017 as a Community Worker. She also workers as an administrator at the Wugularr/Beswick Community Clinic where she lives, and she is the Chairperson of Djilpin Arts. Loretta has a Certificate III in Health Service Assistance (Health Care Worker), Diploma in Health and qualifications in Palliative Care. Prior to working with MJDF, she worked as a community-based Health Worker for many years, and as a teacher's assistant at the Wugularr/Beswick School. Her role with the MJDF includes:
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 | Aboriginal Community/Health Worker - Elah Yunupingu Elah joined the MJD Foundation in April 2017, and his role includes:
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 |
| Groote Eylandt Office Manager & Family Support Worker - Louise Lethbridge Louise started with the MJD Foundation in September 2019 in Groote Eylandt as both FSW and Office 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. |
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| We were devastated when Associate Professor John MacMillan lost his battle with cancer in December 2014 aged only 55. During his 6 years with the MJD Foundation, John's work with us was ground-breaking. He was a wonderful man, and we continue to miss him. Our thoughts remain with John's wife Sarah and his children Ewen, Lucy and Kieran. The MJD Foundation has continued John's genetic education work in his name. If you would like to make a donation to the "John MacMillan Indigenous Australian Genetic Education Program" please follow this link. Some of the important work that John did with the MJDF is listed here:
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