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Visual Snow Syndrome – Micro Community Conversation

Researchers at the University of Western Australia and the Lions Eye Institute are seeking people with lived experience of Visual Snow Syndrome (VSS) to be a part of a Micro Community Conversation. Share what visual symptoms bother you, the visual tasks you have difficulty with, and your thoughts on vision research about VSS. This will help guide our research program on visual processing in VSS. The date of the Micro community Conversation is to be determined.

Do you live with Visual Snow Syndrome (VSS)?

Researchers from The University of Western Australia (UWA) and the Lions Eye Institute are inviting people with lived experience of Visual Snow Syndrome to be part of a Micro Community Conversation to share insights and provide feedback at a two hour, online Micro Community Conversation. The date of the Micro Community Conversation is to be determined.

This is an opportunity to share your experiences and help guide future research into VSS.

About the Project

Visual Snow Syndrome is a neurological condition that causes ongoing visual disturbances, often described as seeing static, flickering dots, or “snow” across the visual field. Many people with VSS also experience other visual symptoms that can affect daily life.

Researchers want to better understand:

  • Which visual symptoms affect people the most
  • Everyday visual tasks that are difficult because of VSS
  • What people with VSS would like researchers to focus on
  • How future vision research can better support people living with the condition

Your feedback will help inform a research program investigating how the brain processes visual information in people with VSS.

Who should attend?

You should attend if you:

  • Have been diagnosed with Visual Snow Syndrome (VSS)
  • Are 18 years or older
  • Live in Australia

Why is this research important?

Visual Snow Syndrome is still not well understood, and many people find it difficult to get information, support, or effective treatment.

This research aims to:

  • Improve understanding of how VSS affects vision
  • Support the development of future treatments
  • Identify ways to measure symptoms and treatment outcomes
  • Improve awareness of VSS among healthcare professionals

By sharing your experience, you can help researchers focus on what matters most to people living with Visual Snow Syndrome.

What will I be asked to do?

You will asked to share:

  • The visual symptoms you experience
  • How VSS affects your daily activities
  • Challenges you face when seeking care or support
  • Your thoughts on current and future research into VSS

Where will the Micro Community Conversation take place?

Online.

An $80 honorarium (gift card) is offered to attendees.

Registrations of interest are essential, please submit the expression of interest form at the bottom of this page.

 

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