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, 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 saw the MJD Foundation as the logical next step to secure a dignified future for the families with MJD on Groote Eylandt and across the other remote communities where it occurs.

Libby is responsible for the MJDF's Research and Education programs.

Gayangwa is a Warnindilyakwa woman of Groote Eylandt. She is 79 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.

Vanessa joined the MJD Foundation in October 2021 as our HR Manager. Vanessa is based in Darwin, from where she supports us on all human resources related matters.

Vanessa grew up living in a few countries on various continents, but lived in Amsterdam (the Netherlands) for most of her life before coming to Australia in 2015. Vanessa is a Work & Organisational Psychologist, who specialised in human resources management. Vanessa has a special interest in organisational culture and looking for more meaningful & innovative approaches to management and performance. She is a strong advocate and believer in empowerment and self-management. When Vanessa isn’t caught up with her busy family with 4 young children, she enjoys camping, nature, music, hanging out with friends and practising the art of storytelling…..and might even enjoy the chance to read a book every now and then!

Jacquie joined the MJD Foundation in November 2022 as the Chief Operating Officer. Jacquie has a long history of working and living in remote communities and in organisations supporting improved health and wellbeing for First Nations people. Jacquie is passionate about improving organisations’ business systems and processes so they can focus on helping those in need. She has extensive experience in people leadership, strategy, performance monitoring, risk and governance, and holds a Graduate Certificate in Applied Business.

In her personal life, Jacquie finds peace in exploring the outdoors, cooking up a storm for family and hanging out with her teenage sons.

Associate Professor David Szmulewicz is a Neurologist, Neuro-otologist and medical researcher. His clinical and research interests include diseases of the cerebellum, vestibular system and the combination of the two. 

David is the founding head of the Balance Disorders & Ataxia Service at The Royal Victorian Eye and Ear Hospital, which was awarded the National Ataxia Foundation’s, ‘Ataxia Centre of Excellence’. He also consults in the Machado-Joseph Disease Foundation’s remote ataxia clinics. 

David is a Principal Research Fellow at The Bionics Institute /University of Melbourne. His awards include the ANZAN Jim Lance Young Investigator Award; The Alfred/Cabrini Hospital’s Melbourne GlaxoSmithKline physician advanced trainee Prize for research; and a VicHealth award for outstanding achievement in the field of health promotion.

David has been the lead clinical investigator on research involving the development of wearable technology for the measurement of ataxia, deep phenotyping and ataxia gene discovery (including CANVAS/RFC1, SCA27B, iCABV) as well as the development of an objective oculomotor test of combined cerebellar and vestibular impairment.

Currently, he is the recipient of research grants from the National Health and Medical Research Council (NHMRC), Medical Research Future Fund (MRFF) and several international funding bodies. David is the Australian delegate and member of the steering committee of The Ataxia Global Initiative (AGI), Head of the task force on cerebellar metrics for the Society for Research on the Cerebellum and Ataxias (SRCA) and head of the Barany Society sub-committee on Combined Vestibular and Cerebellar Disease.