Eye On Vision Foundation

Home
United States
Orlando, FL
Eye On Vision Foundation

The Eye on Vision Foundation strives to raise funds and awareness for research into visual snow syndrome. http://www.eyeonvision.org/ No break. No relief.

The Eye on Vision Foundation's mission is to raise awareness, support patients, and work towards a treatment (and one day cure) for the debilitating neurological condition, Visual Snow Syndrome and its accompanying symptoms. Visual Snow Syndrome (VSS) is a rare disease and difficult to diagnose. Our foundation strives to increase the medical communities’ awareness of this condition, which will all

ow a better diagnostic process for patients suffering with the condition. We also work closely with medical researchers on a global basis, to connect patients with the experts in the field. Visual Snow Syndrome (VSS), is a rare, debilitating neurological condition. The main symptom that all patients share is millions of moving dots across their entire visual field 24/7. This resembles “TV static.” Aside from the static, VSS has several other persistent debilitating visual disturbances that patients experience constantly. VSS does not stop at the devastating visual symptoms; it is a full body experience. Tremors, twitching, depersonalization, tinnitus, migraine are just a few non-visual symptoms associated with VSS. Patients with severe cases are suffering every moment of the day. Our foundations' website is located at EyeOnVision.org

01/24/2023

I recently read about Visual Snow (VS and VSS) and immediately identified with many of the symptoms that I have recognized since I was a kid. Yet, I have never met anyone personally that understands exactly how I see.

The symptoms for me consist of the persistent flashing of a static-like screen of circular, light reddish or sometimes clear rings with a black dot in the center, yet I can see shapes and colors of objects seemingly clearly. WHen I close my eyes the rings are bright red, black center dots flashing. There also sometimes is a moire-type pattern of a tone on tone shadowy cloudlike movement. For example, it almost looks like air passing from the left and from the right that bypasses one another. Yet the direction of the movement is not limited to left and right. It's like witnessing clouds or smoke moving from various opposing directions but it's very subtle. Yet there is always that separate cloudlike movement screen that is layered behind the flashing rings. There are some more visual descriptions but attempting to keep this as short as possible.

The symptoms mostly don't bother me but I am sometimes bothered by my eyes themselves. In the past, I worked in the photo industry and the strobe lights always bothered me. I have a very quick reflex to flash photography and it's hard to capture me with my eyes open with a flash. It is very hard for me to find the right prescription for my eyeglasses and am often unsatisfied.

When I was very young I would ask my mom about them and she would just say that maybe other people don't see them because they're not looking closely enough. I've discussed this a number of times over the years to various people at parties, with friends and family and it would just be something they would laugh with me about. I just chalked it up to being convinced that we all just see and sense things a little bit differently. Twenty years ago I tried looking it up online and found a little chat group on red dot syndrome which was a chat group of theories about people talking about it. So I knew only then that there are other people out there but didn't know until today that it was a recognized neurological syndrome that's being studied.

I'm happy to contribute to any future studies because I am certainly curious how people see uniquely on a spectrum. A 23 & Me genetic test alerted to me a while back that I have precursors for Macular Degeneration and my grandmother had it in her later years.

Brynne Rinderknecht
44 years old

01/07/2023

Sandun shares his story of life with VSS.

I was born in 2002 & I can barely remember seeing some sort of TV Static 📺 appearing for 4-5 seconds, Then it disappears during my Childhood & I had Tinnitus since Childhood. 🚼

In 2017 I had very small floaters & it didn't bother me very much. In 2020 I started using my Phone & PC more frequently because of COVID & it caused me to feel Pain in the Eyes. 👁️

Also since 2019 I started studying a Subject Stream which I don't like very much for my Advanced Level Exam as the Subject Stream I wanted to study wasn't available in my school. I faced the Exam in February of 2022, This was the Main Reason which brought me a Huge Stress. 🤯

As a hobby I did Digital Drawing, Video Editing & Animation, In August of 2022 I did my first professional animation to check for a foreign client. Unfortunately I got all Symptoms of VSS & Vitreous Detachments in both eyes after working on this project as I worked about 10-12 hours per day infront of the Computer Screen during a Whole Month, Even my Country Sri Lanka is on an Economical Crisis & that's why I wanted money to help my family, Now I can't even do a Single Artwork using Phone or PC, I never thought my passion for Drawing & Animation would become a Huge Problem in my Life. 😔

In September of 2022 I got lower results from the Advanced Level Exam which aren't enough to get a job. This made my VSS worse. 💔 Everyone thinks I only have Eye problems & I am tired of explaining my Symptoms to my Family, my friends & Doctors. There isn't anyone who knows about VSS in my country 😑

• How I manage my Symptoms

° During the First 3 Months of VSS Insomnia bothered me a lot. I couldn't sleep because of Tinnitus, Self Lightning of the Eyes & The Sensitivity for Sounds & Lights. But by the Time I got adapted a little to Tinnitus & Self Lightning of the Eyes. I covered the Light bulb in the room but didn't make the room completely dark. And I removed the Clock from my Room as I used to count hours while not sleeping. 😴

It would be awesome if we can build an App which would work on a VR Box to represent the Symptoms in a Virtual World. Then it would be helpful to Doctors & People to understand this Syndrome much more accurately. 📑

I think in the Future someone will find a cure for VSS or At least a Brain Scan for to prove VSS. I am not giving up hope on that. 💜️

11/29/2022

GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. GivingTuesday is all about celebrating each and every single act of generosity you have to offer. Whether it’s making someone smile, donating to a non-profit, helping a neighbor out, or showing up for an issue or people you care about, you have something to contribute. Identify your gifts, pick a cause that gets you fired up, and give back – not just today but every day. We hope that Eye on Vision Foundation is a cause that you can get behind today to accelerate a cure for Visual Snow Syndrome - EyeOnVision.org

11/21/2022

Sometimes the lights of the season can adversely affect those suffering from Visual Snow. Night glare glasses can sometimes help cut the glare a little.

11/14/2022

I wanted to personally reach out and thank you for the generous donations that we continue to receive here at the Eye on Vision Foundation Corp. If you have not had an opportunity to contribute for 2022 we welcome each and every donation that we receive. EOVF is currently supporting several research studies into VSS. With the Monash and Colorado studies funded, we are concentrating funds received now on Dr. Schankin's new exciting treatment trial. Please go directly to EyeOnVision.org

11/02/2022

We are expecting to hear from the ethics committee by the end of this month. After that, recruitment will begin. Let's outline a few details for you.

Dr. Schankin and Dr. Klein's Visual Snow Syndrome Treatment study is in need of $90,000. Dr. Schankin reached out to EOVF seeking funding so that the study can be completed in its entirety.

- A targeted treatment approach doing neuromodulation at Inselspital Bern is planned.

- Recruitment will start by the end of 2022

- Promising preliminary data from a previous study performed with support by EOV foundation.

- Treatment will be over one week in Bern

- Current name the study is referenced as - EEG-Signature of Visual Snow Syndrome and evaluation of a targeted treatment approach with transcranial alternating currents stimulation (tACS)

Donations are being accepted at EyeOnVision.org and needed today, so we do not see a delay in this important study. Please don't rely on someone else to donate. We need you! We need you to step up today, so we can ensure there are no delays.

10/17/2022

The primary, and shared, symptom of VSS sufferers is Visual Snow. This resembles “TV static” and is perceived and seen as millions of moving and flashing dots over the entire visual field. This static is seen whether the eyes or opened or if they are closed.

10/03/2022

Visual Snow vs Normal Vision. VS creates a layer of moving static over the entire visual field. Non-moving filters are not the perfect representation of VS, but it helps to give non-sufferers an idea of how we see. Have access to a moving static filter overlay? We'd love for you to contact us at eyeonvision.org

10/02/2022

Donor dollars are at work at Monash University! Dr. Fielding's team has been able to hire an imaging specialist to indepthly analyze VSS patient MRIs. On the horizon is an investigation of Monash's VSS eye movement signature directly in the MRI. This exciting research could not be taking place without the dedication of our supporters. We want to continue to financially support this critical research that Monash is performing. Thank you again for your continued donations through EyeOnVision.org

09/25/2022

Tinnitus is often seen (or more appropriately heard) in patients experiencing Visual Snow Syndrome. Tinnitus is many times thought to be a ringing in the ears, but the sound many times in originating in the head, not the ears themselves. Similar to VSS where the static is originating from the brain.

09/23/2022

As Dr. Schankin's research will begin to get underway funding is needed now to ensure that there are no financial delays in progress. Please consider donating today to research efforts to accelerate a cure for Visual Snow Syndrome.

Address

14614 Josair Drive
Orlando, FL
32826

Website

http://www.eyeonvision.org/

Alerts

Be the first to know and let us send you an email when Eye On Vision Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Eye On Vision Foundation:

Shortcuts

Want your organization to be the top-listed Non Profit Organization in Orlando?