Get Involved

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Sierra Domb (Founder, VSI) and John Salley (Former NBA Basketball Player & Talk Show Host)
How to Help

Support Visual Snow Syndrome Research

All donations to the Visual Snow Initiative go directly to Visual Snow Syndrome (VSS) research.

Your tax-deductible contribution ensures that global research will continue and makes a positive difference in the lives of people affected by VSS.

Details regarding the types of studies we are funding can be found in the section below, as well as on our Donate and News & Research pages. 

In the additional sections below, we also share other ways that you can get involved and help support our efforts to generate further awareness, education, resources, patient advocacy, treatment development, and research for VSS.

Thank you so much!

VSI's Visual Snow Syndrome Research

Current areas of study for VSI-funded research include:

Identifying biomarkers and further understanding those which have recently been identified (i.e. abnormalities in serotoninergic and glutamatergic neurotransmission)

Understanding the pathophysiology and underlying mechanisms of VSS as a network disorder

Using this data to identify potential safe, targeted, and effective treatments for VSS; this includes both possible medications/pharmacological and additional noninvasive interventions

Methods include:

Brain imaging using the most powerful state-of-the-art neuroimaging techniques, including a 7-Tesla MRI

Positron emission tomography (PET) imaging to test the distribution of different chemical receptors in the brain

Receptor-Enriched Analysis of Functional Connectivity by Targets (REACT) approach

 Utilizing Mindfulness-Based Cognitive Therapy modified for VSS symptoms (MBCT-vision) to alter the brain’s visual network and neural pathways to alleviate symptoms

 Utilizing visual tests and blood samples

 Electroencephalography (EEG)

 Neuromodulation

 Neuro-Optometric Rehabilitation Therapy (NORT) to strengthen visual function, alleviate symptoms, and improve quality of life

 Transcranial magnetic stimulation (TMS) / Repetitive transcranial magnetic stimulation (rTMS)

Principal investigators include:

• Dr. Francesca Puledda in association with Dr. Peter Goadsby, King’s College London

 Dr. Sui Wong, Guy’s and St Thomas’ NHS Foundation

 Dr. Christoph Schankin and Antonia Klein, Bern University Hospital

• Dr. Victoria Pelak, University of Colorado (Funded by VSI in 2019 and delayed due to the pandemic, Dr. Pelak has stated that her study on rTMS for VSS study is still ongoing.)

Study Participation

For more information on clinical trials involving Visual Snow Syndrome (VSS) and/or Visual Snow (VS), please visit ClinicalTrials.gov or ICH GCP.

In addition to the databases above, we share study participation opportunities and information on VSI-funded/supported research via our website (in the News & Research section), newsletter, and social media channels.

You can also reach out to VSS researchers if you would like to share information about your case that may be helpful to them. Many VSS researchers and medical professionals can be found in our global Physicians & Specialists Directory.

With VSI-funded/supported studies, participation opportunities will be announced through VSI, as well as any affiliated institutions or universities. Otherwise, researchers will share them via their own website and/or social media.

Note: Oftentimes, due to (privacy/legal) regulations, participants for studies must be recruited via the institution or university that the researchers are affiliated with. Patients seen by physicians and researchers in-practice or in-person are often considered favorable candidates for studies. However, there are exceptions and researchers may notify the VSS community directly when they are seeking participants for studies. They will share the eligibility requirements and which specific facets of VSS they will be exploring in their research.

Share Your Story, Spread the Word

Sharing your story and spreading the word can help generate valuable awareness, education, and interest in Visual Snow Syndrome (VSS). Importantly, it is an opportunity to help, inspire, and relate to others with VSS who may be struggling or feeling alone. Health professionals also benefit from hearing about your symptoms and experiences. This contributes to their understanding of the condition, which advances VSS research and improves patient care.

Methods:

Fundraising Events

Fundraising by participating in or hosting events can be a rewarding and impactful way to make a positive difference.

Contact Us

If you are interested in fundraising for Visual Snow Syndrome (VSS) research/the Visual Snow Initiative by organizing or participating in an event, thank you! 

We kindly ask that you contact our team at [email protected] regarding your efforts.

Together, we can discuss collaboration ideas and how our team can best support your event or campaign related to VSS.

Sharing Your Inspiring Efforts

With your permission, our team may announce and honor your inspiring fundraising efforts via our website, newsletter, and/or social media channels.

Methods:

Shop to Support the Cause

Visual Snow Syndrome-themed/Visual Snow Initiative shirts, hoodies, and more are available in our online shop. They are offered in multiple styles, colors, and sizes (XS-4XL). 

100% of the net proceeds go directly to Visual Snow Syndrome research.

The Visual Snow (VS) Worldwide Project

This project features images of people and places from around the world. The aim is to demonstrate the diverse, global impact of Visual Snow Syndrome (VSS) and its primary symptoms, such as Visual Snow (VS), palinopsia, and more. The VS Worldwide Project illustrates the significant contrast between life for those with symptoms of this condition versus those without. Together, by sharing these images, we can increase awareness for VSS and create a world where affected individuals are better understood and supported.

If you would like us to feature a specific location or visual symptom of VSS, please contact us.

The Visual Snow (VS) Worldwide Project
Be Part of the Solution

Support Visual Snow Syndrome Research

All donations to the Visual Snow Initiative go directly to Visual Snow Syndrome (VSS) research.

Your tax-deductible contribution ensures that global research will continue and makes a positive difference in the lives of people affected by VSS.