Wings 4 Parkinson’s fledged from a Parkinson’s Disease (PD) interest group that first met in November 2021. Initially comprising seven participants, led by Dr Harley Stanton, Professor Jane Alty and Professor Tracey Dickson, the group held five meetings each year in 2022-2023. New members were added throughout these meetings, based on their interest and expertise in areas of PD advocacy, research, knowledge, care, and prevention. By early 2024, Wings for Parkinson’s had grown to incorporate 30 members representing these key areas.
On 19th February 2024, the Wicking Dementia Research and Education Centre and the Menzies Institute for Medical Research hosted a highly successful Parkinson’s symposium, which drew more than 600 attendees—200 in person and an additional 400 online. The event, was organised in collaboration with Wings for Parkinson’s and marked the launch of the Tasmania Parkinson’s Project (TPP), co-led by Professor Jane Alty and Professor Michele Callisaya.
The symposium featured a keynote address by Professor Glenda Halliday, the 2022 New South Wales Scientist of the Year, who shared the latest research developments in PD. In addition to Professor Halliday’s presentation, local researchers and primary healthcare professionals led a series of informative sessions. Audience members were also given the opportunity to engage with a panel of experts in both Parkinson’s research and healthcare, fostering a rich dialogue on current challenges and developments. The Tasmanian School of Medicine string quartet was invited to play, and the event provided a highly successful opportunity to engage with the community.
In addition to hosting the collaborative symposium and launching the TPP, Wings for Parkinson’s played a key role in supporting the National Parkinson’s Action Plan Taskforce and then initially the National Parkinson’s Alliance (NPA). The initial work of NPA is in the promotion, advocacy, and development of the National Parkinson’s Action Plan. With the involvement of Wings for Parkinson’s members Mike Whitehouse, Professor Michele Callisaya, Professor Jane Alty, and Dr. Harley Stanton, who chairs Wings for Parkinson’s, was instrumental in uniting political leaders and strengthening support for the plan.
The collaboration and advocacy of the Alliance, culminated in the first National Parkinson’s Summit in Parliament House, Canberra in March 2024 hosted by Senators Bilyk and Askew as co-chairs of the Parliamentary Friends of Parkinson’s (PFOP). Following an NPA Budget submission in January 2024 requesting $400,000 for the development of a National Parkinson’s Action Plan (NPAP) the subsequent Federal Government provided 2024 Budget funding of $800,000 over two years. This funding is being used to develop the NPAP and drive crucial improvements in key areas such as, education, early diagnosis, access to care and treatment and funding for research.
Wings for Parkinson’s has succeeded in areas of advocacy, research, knowledge, care and prevention, with additional highlights listed below:
Advocacy
The combined expertise and insights of Wings for Parkinson’s members place the organisation in a unique position to advocate for prevention, policy reform, research, education, and the primary healthcare needs of individuals living with PD. A key focus for Wings for Parkinson’s has been advocating for disease prevention, with significant efforts directed towards addressing environmental factors linked to PD.
One notable example of this advocacy is Wings for Parkinson’s push for a ban on the herbicide Paraquat, exposure to which has been linked to an increased risk of PD. In line with the latest scientific research and the actions taken by the European Union, the United Kingdom, Canada, and China, members of Wings for Parkinson’s members Dr Frank Nicklason and Dr Harley Stanton submitted a formal petition to the Australian Pesticides and Veterinary Medicines Authority, urging similar regulatory action to protect public health.
In addition to its prevention efforts, Wings for Parkinson’s has been a leading advocate in the areas of healthcare and policy. This includes campaigning for the inclusion of additional Clinical Nurse Consultants in the south of the state, who provide crucial support for people with PD through expert advice, medication management, and continuity of care. More widely throughout Tasmania, Wings for Parkinson’s have advocated for established pathways of care following diagnosis, this includes supporting several funding submissions that focus on forming a model of care. They have also provided $2500 resourcing to Parkinson’s Tasmania for continuation of their services to the PD community. On the national stage, Wings for Parkinson’s has worked alongside the National Parkinson’s Alliance to develop and promote the National Parkinson’s Action Plan, which resulted in $800,000 in Federal Government funding for NPAP.
Research
Wings for Parkinson’s has played a crucial role in supporting the establishment of the Tasmanian Parkinson’s Project (TPP), providing $4,500 in resources. The TPP aims to develop a comprehensive registry of individuals with PD across Australia, offering them opportunities to learn more about the condition and participate in relevant research initiatives. In addition, Wings for Parkinson’s has been instrumental in promoting the Human Intelligent Movement Analysis Centre (HIMAC) which was funded through a $512K infrastructure grant awarded to co-lead Professor Jane Alty (Wicking Centre) and Dr Rebecca St George (Psychological Science). HIMAC’s cutting-edge technology allows for precise analysis of human movement, enabling the early detection of changes that may indicate PD or other neurological disorders, and the launch attracted wide media attention.
Several members of Wings for Parkinson’s, including Professor Jane Alty, Professor Michele Callisaya, Samantha Bramich, and Associate Professor Barbara de Graaff, have successfully secured research grants from NHMRC, Medical Protection Society Tasmania and Royal Hobart Hospital Research Foundation to explore various aspects of PD. Their projects focus on enhancing early detection methods, examining epidemiological links to PD, evaluating the economic burden of PD in Tasmania, and investigating strategies to slow its progression, particularly through exercise-based interventions. Another member, medical student, Sigourney Chiranakorn-Costa undertook her medical elective at the University of Oxford with Prof Antoniades learning about precision tracking of Parkinson’s in the Oxford QUantification In Parkinsonism study (OxQUIP), and subsequently was short listed for the prestigious Rhodes scholarship, evidence of nurturing the next generation of Parkinson’s researchers in Tasmania.
In July 2024, Professor Jane Alty was invited to Malaysia by the Global Parkinson’s Genetics Program, GP2, (funded through the Michael J Fox foundation) to present research on the ISLAND Sleep Study (prodromal Parkinson’s) and the TPP and has subsequently completed registration of these studies with the global consortium.
Additionally, Wings for Parkinson’s has partnered with Associate Professor Gabrielle Todd from the University of South Australia, who presented her research on the association between long-term methamphetamine use and the development of PD. In Tasmania, the organization has also collaborated with Associate Professor Barbara de Graaff from the Menzies Institute of Tasmania to assist in the design and planning of a nationwide epidemiological study on PD.
Members of Wings for Parkinson’s have also supported a national MRFF grant application to implement ParkinsonNet to the Australian context. The result of this application led by Professor Michele Callisaya, is still pending. This model would significantly increase access to high quality evidence-based multi-disciplinary care for people living with Parkinson’s.
Knowledge
Wings for Parkinson’s played a key role in initiating and supporting the development of the Parkinson’s Massive Open Online Course (MOOC), co-lead by Professors Jane Alty and Michele Callisaya. Designed as an accessible educational resource, the Parkinson’s MOOC aims to support people with PD, their caregivers, medical and allied health professionals, and the broader community.
In 2024, Wings for Parkinson’s members seized multiple opportunities to share their knowledge with the community. Professors Jane Alty and Michele Callisaya hosted four public webinars as part of the TPP covering topics such as exercise, speech changes, and sleep. Each webinar attracted an audience of 200-300 people. Professor Jane Alty was invited to deliver the Murray Yaxley Memorial Lecture on the TPP at the Lindisfarne Freemasons Hall. She extended the invitation to two visiting medical students from London, UK, who joined her at the event. Professor Michele Callisaya was also invited to present the project to health professionals at various prestigious venues, including the Launceston General Hospital Grand Round, the Community Rehabilitation Unit in Hobart, and to neurologists at Monash University in Melbourne.
In August 2024, Wings for Parkinson’s collaborated with Associate Professor Jade Cartwright to organise and deliver a successful integrated professional learning program titled Parkinson’s: Bringing the Team Together – Learning With, From, and About Each Other. Held at the Launceston Clinical School, the program brought together community members with lived experience, their primary healthcare providers, and nursing, medical, and allied health students. The event highlighted the importance of interdisciplinary collaboration in addressing the challenges of PD.
Professor Jan Radford, Director of the Launceston Clinical School and a key member of Wings for Parkinson’s, co-authored a paper advocating for the early prescription and administration of Levodopa following PD diagnosis. This article, developed with input from Wings for Parkinson’s members and colleagues at Launceston General Hospital, provides valuable insights into improving clinical practices for care of people with PD.
Care
Improving accessibility to care for Tasmanians living with PD is a key goal of Wings for Parkinson’s. As part of a Churchill Fellowship, Phil Ladlow (neurological physiotherapist) visited 15 sites across Europe, Canada, and North America over a 10-week period in 2023. During this time, he gained valuable insights into pioneering biotechnologies related to functional movement control and neuroplasticity. In 2024, Phil applied this knowledge to establish Advanced Rehabilitation Tasmania, a state-of-the-art rehabilitation centre featuring a LEXO robotic-assisted gait trainer (RAGT). This facility provides cutting-edge movement therapy and is the first of its kind in Tasmania and one of only a few in Australia.
In addition, several allied health professionals among Wings for Parkinson’s members, including Michelle Mortensen (occupational therapist), Jennifer Stacey (speech-language pathologist), Michele Callisaya (physiotherapist), have collaborated with Sarah Fox-Smith (occupational therapist), and aim to research PD consumer access to healthcare services, ultimately aiming to reduce the impact of PD on public healthcare providers.
Michelle Mortensen also completed training in Lee Silverman Voice Training BIG (LSVT BIG), an evidence-based method to improve motor function in individuals with Parkinson’s. Michelle now works in conjunction certified LSVT LOUD therapist, Jennifer Stacey to deliver this allied health service in both northern and southern regions of Tasmania.
Prevention
In addition to their advocacy for a ban on the use of Paraquat in Tasmania, Wings for Parkinson’s have supported research into the causes of PD from both a biomedical and population perspective, with research studies currently conducted at Menzies Institute for Medical Research.
Other achievements
Several members of Wings for Parkinson’s have received academic promotions at the University of Tasmania over the last year. These include the promotion of Professor Tracey Dickson to Director of Menzies Institute for Medical Research in late 2022, and promotion of both Michele Callisaya and Jane Alty to Professor in late 2024.
Future direction of Wings for Parkinson’s
After three years of dedicated leadership, Dr. Harley Stanton has made the decision to step down as Chair of Wings for Parkinson’s. During his tenure, Dr. Stanton demonstrated exceptional passion, persistence, advocacy, and leadership, making a significant impact on the organisation and the PD community Australia-wide.
It has been agreed that Wings for Parkinson’s will continue its important work, given its immense value to the PD community and its proven success as an influential PD interest and advisory group. The future goals and direction of the group are currently under consideration and will be determined in due course.