#CureVSS: The Fundraiser for Monash University VSS Study
I've lived my entire life with a mystery:
Why do I see a veil of sparkling, moving, finely-sized dots across my entire visual field? Why do the edges of things glow? Why do I see halos and spears of light around light sources? Why does the sky, or any solid wall of color, move and shift with dots and sparks and flecks? Why does it all get more intense at night?
For most of my life, I didn't talk to other people about what I was seeing because no one seemed to know what I was talking about when I had tried. I couldn't make sense of what I was seeing, so I chose to ignore my unusual visual experiences and just live my life.
In 2015, I started writing autobio essays and became determined to really figure out my mysterious visual experiences.
Only since 2018 have I known about Visual Snow Syndrome, aka VSS. Only in the last few months have I been formally diagnosed with this rare neurological state! That’s 6 years of research, dead ends, and writing on my own. And the story keeps growing.
VSS as we know it right now includes a wide range of visual and nonvisual symptoms. Many people with it adapt, but others find it extremely debilitating. We don’t even know how many people live with it right now.
More research and scientific studies are needed to understand VSS!
There are few studies currently ongoing, and many were put on hold or defunded during 2020 with the outbreak of COVID-19.
Dr. White and Dr. Fielding of Monash University in Melbourne (Australia) have spearheaded Visual Snow research for years and have the world's largest database of patients who they regularly examine in studies. They have designed a number of promising studies that they believe will unlock the mechanism of VSS and pave the way for personalized treatments.
Unfortunately, due to the pandemic, and to the surprise of everyone involved, the Australian state withdrew its financial support from this study with short notice.
I am teaming up with various international organizations to fundraise and build awareness! The Eye on Vision Foundation started a GoFundMe campaign, which is aimed in particular at Americans, as our donations are tax-deductible.
Click to DONATE & SHARE!
The organizations in collaboration:
The Eye on Vision Foundation, which has already donated several hundred thousand dollars for Visual Snow studies.
The Visual Snow Foundation, a British Visual Snow research org.
Visual Snow Syndrome Germany, a brand new German Visual Snow org.
Visual Snow Syndrome Netherlands, a foundation from the Netherlands that is currently being set up.
And more are coming on board!
We are grateful for every donation that brings us closer to financing the studies and thus closer to science-based and data-driven treatment options! $2 or $2,000 - it all helps! #CureVSS