PSP Australia
Overview
flowchart TD
PSP["PSP"] -->|"associated with"| Alzheimer["Alzheimer"]
PSP["PSP"] -->|"associated with"| Als["Als"]
PSP["PSP"] -->|"associated with"| Alzheimer_s_disease["Alzheimer's disease"]
PSP["PSP"] -->|"expressed in"| neurons["neurons"]
PSP["PSP"] -->|"downregulates"| SV2A["SV2A"]
PSP["PSP"] -->|"targets"| tauopathy["tauopathy"]
PSP["PSP"] -->|"participates in"| unfolded_protein_response["unfolded protein response"]
PSP["PSP"] -->|"regulates"| STX6["STX6"]
PSP["PSP"] -->|"associated with"| frontotemporal_dementia["frontotemporal dementia"]
PSP["PSP"] -->|"participates in"| oxidative_stress_response["oxidative stress response"]
PSP["PSP"] -->|"associated with"| Parkinson_s_disease["Parkinson's disease"]
PSP["PSP"] -->|"regulates"| Parkinson_s_disease["Parkinson's disease"]
PSP["PSP"] -->|"associated with"| tauopathy["tauopathy"]
PSP["PSP"] -->|"biomarker for"| Ms["Ms"]
style PSP fill:#4fc3f7,stroke:#333,color:#000
PSP Australia is the national patient advocacy organization for progressive supranuclear palsy in Australia. The organization provides support to Australian patients and families affected by PSP, raises awareness of the condition within the medical community and general public, and funds research into the causes, diagnosis, and treatment of PSP.
Mission
...PSP Australia
Overview
Mermaid diagram (expand to render)
PSP Australia is the national patient advocacy organization for progressive supranuclear palsy in Australia. The organization provides support to Australian patients and families affected by PSP, raises awareness of the condition within the medical community and general public, and funds research into the causes, diagnosis, and treatment of PSP.
Mission
PSP Australia's core objectives include:
- Providing support and information to people living with PSP in Australia
- Connecting patients and families with healthcare resources and support networks
- Funding and promoting Australian research into PSP
- Raising awareness of PSP among healthcare professionals and the community
Activities
Patient and Family Support
PSP Australia operates several support services:
- Support network: Connecting PSP patients and families across Australian states and territories
- Information resources: Educational materials about PSP for patients, caregivers, and healthcare providers
- Regional meetings: Support group meetings held in major Australian cities
- Caregiver resources: Materials and guidance specifically for those caring for PSP patients
Research Funding
The organization supports Australian PSP research through:
- Research grants: Funding for Australian scientists studying PSP mechanisms and treatment
- Clinical trial support: Facilitating Australian participation in international trials
- Travel awards: Enabling Australian researchers to attend international conferences
- Collaboration with CurePSP: Leveraging international research funding for Australian projects
Healthcare Partnerships
PSP Australia works closely with major Australian research centers:
- Brain and Mind Centre, University of Sydney — Leading movement disorder research
- Florey Institute of Neuroscience and Mental Health — [Tau protein](/entities/tau-protein) and neurodegeneration research
- Royal Prince Alfred Hospital — Clinical care for PSP patients
- Monash University — Dementia and neurodegenerative disease research
Clinical Trial Landscape in Australia
Australia has several active sites for PSP clinical trials:
- Sydney Brain and Mind Centre: Phase 2 trials for tau-targeting therapies
- Melbourne Neuroscience Centre: Imaging and biomarker studies
- Queensland Brain Institute: Early-phase studies in tauopathies
Australian patients have access to trials through these major centers, with PSP Australia facilitating awareness and recruitment.
Reference to CurePSP
PSP Australia is part of the international [CurePSP](/organizations/curepsp) network, which provides:
- Shared research resources and funding opportunities
- International conference participation
- Global PSP patient registry initiatives
- Collaborative research programs
Leadership and Governance
PSP Australia is governed by a board combining patient advocates, caregivers, and medical advisors:
- Chairman: Dr. Simon Lewis (neurologist, University of Sydney)
- Executive Director: Michelle Thompson (patient advocate and caregiver)
- Medical Advisory Board: Neurologists from major Australian movement disorder centers
Organizational Structure
The organization operates through:
- National office: Sydney, coordinating all Australian operations
- State coordinators: Volunteer representatives in NSW, VIC, QLD, SA, WA, TAS
- Online support: Digital platforms connecting patients and families across Australia
Clinical Research in Australia
Australia has become a significant contributor to international PSP research:
Key Research Institutions
- Brain and Mind Centre, University of Sydney — Dr. Simon Lewis leads Australia's largest PSP research program, combining clinical care with neuroimaging and biomarker research
- Florey Institute of Neuroscience and Mental Health, Melbourne — [Tau protein](/entities/tau-protein) biology and therapeutic target research
- Royal Prince Alfred Hospital, Sydney — Clinical trials and movement disorder expertise
- Monash University, Melbourne — Dementia research and clinical outcome measures
- Queensland Brain Institute, Brisbane — Early-phase studies in tauopathies
- Neuroscience Research Australia (NeuRA), Sydney — Gait and balance research in PSP
Australian Clinical Trials
| Trial | Phase | Australian Sites | Focus |
|-------|-------|----------------|-------|
| Tau PET imaging studies | Phase 2/3 | Sydney, Melbourne, Brisbane | Diagnostic biomarkers |
| Neuroprotective agents | Phase 2 | Sydney, Melbourne | Disease modification |
| International observational | Prospective | All major centers | Natural history |
Scientific Contributions
Landmark Australian Research
| Contribution | Journal | Year | Impact |
|-------------|---------|------|--------|
| PSP gait phenotyping | Movement Disorders | 2018 | Identified distinctive gait patterns in PSP subtypes |
| Caregiver burden studies | JNNP | 2019 | Quantified and characterized PSP caregiver needs |
| PSP-QuiPE validation | Parkinsonism Rel Disord | 2020 | Australian validation of patient-reported outcome measure |
| Eye tracking biomarkers | Neurology | 2021 | Developed automated saccade analysis for diagnosis |
Key Australian Researchers
- Simon Lewis (University of Sydney) — PSP clinical phenotyping, gait analysis, caregiver research
- Matthew Paradise (Brain and Mind Centre) — Neuroimaging biomarkers, disease progression modeling
- Courtney Lewis (Monash) — Clinical outcomes and quality of life in PSP
Healthcare System Context
Australia's universal healthcare system (Medicare) and aged care system provide comprehensive PSP support:
Australian Healthcare for PSP
- Specialized movement disorder clinics: 8 major centers with PSP expertise (Sydney, Melbourne, Brisbane, Perth, Adelaide, Hobart)
- NDIS (National Disability Insurance Scheme): Individualized funding packages for PSP patients, covering equipment, home modifications, and support services
- Aged care system: Home care packages and residential aged care for advanced PSP patients
- Palliative care: Integrated palliative approach through specialist services
Australian Support Systems
- Neurological Alliance: PSP Australia part of broader neurological consumer advocacy
- Carer Gateway: Government support services for family caregivers including respite
- Commonwealth Home Support Programme: Entry-level services (meals, transport, domestic assistance)
Patient Support Services
Programs and Services
PSP Australia provides:
- Support hotline: Telephone support across Australian time zones
- Support groups: Regular meetings in Sydney, Melbourne, Brisbane, Perth, Adelaide, Newcastle
- Caregiver education: Workshops on managing dysphagia, falls, communication strategies, and behavioral changes
- Equipment loans: Communication devices, wheelchairs, and adaptive equipment through partnerships
- Family support grants: Small grants to help families with unexpected PSP-related expenses
- PSP Australia website: Australian-specific resources, research updates, and event information
- Newsletter: Quarterly updates on research developments, support services, and events
- Webinars: Regular online education sessions with Australian and international experts
Advocacy and Awareness
Australian Rare Disease Policy
PSP Australia participates in Australian rare disease advocacy:
- Rare Voices Australia: Peak body for rare disease advocacy in Australia
- Parliamentary events: Annual Rare Disease Day events in Canberra
- Research funding: Advocacy for increased NHMRC funding for neurodegeneration research
International Engagement
- CurePSP International: Active collaboration with global network
- Asia-Pacific Movement Disorder Society: Regional conferences and research collaboration
- World Parkinson Congress: Regular Australian participation in PSP programming
References
[PSP Australia Website](https://www.pspaustralia.org.au/)
[CurePSP International Network](https://www.curepsp.org/)
[Brain and Mind Centre, University of Sydney](https://www.sydney.edu.au/brain-mind)
[Rare Voices Australia](https://www.rarevoices.org.au/)Pathway Diagram
The following diagram shows the key molecular relationships involving PSP Australia discovered through SciDEX knowledge graph analysis:
Mermaid diagram (expand to render)