VSI values transparency with our supporters. After years of agony and mounting unknowns, VSI’s Founder, Sierra, finally got a diagnosis: she had Visual Snow Syndrome. But when Sierra was told there was no available treatment for her condition, she set out to change that.
VSI was founded to bring together leading Visual Snow doctors, scientists, and medical researchers in the name of a cure. Along the way, Sierra, who previously knew very little about neurology, communicated with these experts to educate herself on the human brain and its connection to our vision. Although Sierra was well-intentioned, she knew the desire to help cure VSS wasn’t enough; she had to actually learn how this condition works biologically and discover the process of what exactly goes into finding solutions for underrepresented diseases.
And honestly, it was a lot for her to digest. But it was also helpful to know what to expect and what it would take to reach VSI’s goal! Sierra thought it might be beneficial to share of some of the information that was given to her along the way by researchers with you.
The VSI team was told:
- Finding a cure for a complex neuro-ophthalmological condition (like Visual Snow) typically takes years of hard work and effort.
- Beyond expertise and time, funding facilitates research.
- Establishing awareness and legitimacy for VS within the medical community/mainstream society is pivotal to avoid misdiagnosis and attain visibility.
- Breakthroughs are always possible.
Our supporters inquire about timelines and what it will take to cure Visual Snow. The team at VSI always wants to be upfront with them. We were merely a group of hopefuls with good intentions when this all started, sharing a common goal. After consulting with professionals on what is required to attain this goal, we are still hopeful, but we now understand what it will take to get there. We want you to know as well.
The reality is this: we are all a part of something that has never been done before. This includes those who have Visual Snow, their loved ones, the doctors/scientists/researchers who are fighting everyday to cure this condition, the team at VSI, and everyone who has supported us. We all share a common goal.
So, is it possible to get to a cure? Yes, of course! It will just take time. This is something neither VSI nor any researchers can control. How long is dependent upon various factors. Visual Snow research is also a new and emerging field. It takes trial and error. Breakthroughs are always possible. Additionally, donations help further research. With research comes new information VSI can share with you all. If there is something we feel may help the VS community or is recommended by our experts, we will let you know. Whenever we receive updates from researchers, VSI will always share them with you.
Although our team wished Visual Snow was already a well-known condition and that a cure for it could easily be found, we also know that things that are important and impactful seldom come easily. But just because something is difficult to achieve, doesn’t mean we cannot overcome and conquer VSS. The determination of the VSI team isn’t going anywhere. We’re going to continue to advocate towards a cure, solutions, and awareness! And VSI is involved in all areas of worthy of investigation when it comes to VS research, so all bases are being covered. We will be reporting the facts and sharing results to you as they are delivered or revealed to us along the way.
We at the VSI are always doing all that we can. If anyone has any ideas on how to further help our cause or would like to contribute, please let us know. As always, we are immensely grateful for your support in all of its forms!