MEDALS of the Order of Australia were awarded to three MJD Foundation staff today, coinciding with the organisation’s 10th birthday.
Gayangwa Lalara, Nadia Lindop and Elizabeth Massey have been with the Foundation since it started.
Gayangwa Lalara OAM is a co-founder, Vice Chairperson and senior Cultural Advisor of the MJD Foundation.
Gayangwa is an Anindilyakwa woman of Groote Eylandt. She is 73 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 six 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. Gayangwa was also a driving force behind the MJDF Board making the huge decision to expand services outside of Groote Eylandt to support other Aboriginal families across the NT and QLD living with MJD. 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.
Elizabeth (Libby) Massey OAM – is a co-founder of the MJD Foundation and is the Director of Research and Education. She is also appointed as an Adjunct Lecturer at James Cook University.
Libby grew up at Angurugu on Groote Eylandt and her family 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, Masters of Public Health and a Bachelor of Law, ‘down south’ believes passionately in the need to provide equality in care options and research participation opportunities in remote Aboriginal communities.
Nadia Lindop OAM – is a co-founder and Chief Executive Officer of the MJD Foundation.
Libby had often talked about MJD, the devastating impacts on the community, with her long time friend, Nadia Lindop. In 2008, after a successful 20 year corporate career, Nadia brought her business and management skills to building the MJD Foundation from scratch with Gayangwa and Libby. What started as a voluntary role to establish the organisation, its governance structures, and its funding base, quickly turned into a passion as Nadia was moved by the impacts of the disease on family’s lives and inspired by the graciousness of Aboriginal people living with MJD.
In 10 years, the MJD Foundation has grown from a small start-up charity in 2008 with $100,000 to an organisation supporting hundreds of Aboriginal families affected by MJD and employing 30 staff. The MJDF Board/staff comprises 17% people living with disability, and 43% Aboriginal Australians.