Do you want to make a real difference in the lives of people who are suffering from a rare neurological disorder?We NEED your help.
The Eye on Vision Foundation is the ONLY charity in the world raising money for much needed research into visual snow syndrome.
What does this mean? Why is it important?
If we cannot raise this money the research cannot continue and those of us suffering day in and day out will have no hope for a treatment or a cure.
If there was ever a way for you to make a positive impact on a persons life, this is it. Your donation will not get lost in paperwork and accounting, it goes straight to the research.Visual Snow - What is it?
Visual snow syndrome is an untreatable neurological disease that devastatingly affects a persons vision, hearing, thinking, and physical body. Many of the symptoms a patient experiences are constant and do not come and go. Symptoms vary from patient to patient, but all patients with visual snow syndrome see static (similar to bad TV reception) everywhere they look.My Story
My visual snow story started around the age of 6. I was young, so I'm not exactly sure if I was 5 or 6, but I clearly remember going to my mom in first grade and asking her what the flying dots I was seeing in the dark were. She thought I was talking about floaters, told me it was normal, and that was the end of that. Two years later my teacher contacted my mom telling her that I was having trouble seeing in school. My mom took me to the eye doctor and we learned that I was legally blind. Fortunately I was able to be corrected with glasses, but the doctor seemed baffled how this could have gone missed. Looking back now I wonder if the start of my visual snow two years prior had something to do with it.
In 2005 my visual snow progressed to the full blown syndrome. I was experiencing worsening visual acuity, floaters, after images, loss of contrast sensitivity, ghosting, glare, halos, starbursts, tingling and numbness in my body. I was hospitalized and had every test run that was available and no doctor anywhere could figure out what was wrong with me. I was sent home time and time again from tests with doctors confused and questioning what was wrong with me. After many months of research on my own I came to realize that I had a little known condition called visual snow. Sadly, there was no research being done for the condition, so I started a non-profit and went on a quest to find a cure. In 2011, I was contacted by a visual snow patient whose neurologist was interested in researching visual snow. The research began in 2012. In 2014, my visual snow syndrome progressed again with worsening symptoms and new symptoms of tinnitus, head and ear pressure, trails, night blindness, along with another regression of my visual acuity (the eye chart test) and the development of more floaters.
There is not enough known about visual snow, so we do not know how much is reversible and treatable and how much is permanent damage. The changes that some patients have experienced to the eye itself are permanent (visual acuity loss and floaters). The changes to the brain are hopefully reversible. Time is crucial to this research.
Myself, and many others like me, are counting on you to donate to the cause or share this story so that we can live our lives like we want to. Simple pleasures like going to the beach, reading a book, going for a Sunday drive or watching the sunset are too visually taxing for many sufferers.Our Children
Because so little is known about visual snow there is no official documentation on whether this is a genetic condition or not. Nothing official, but sadly we have conducted our own surveys, and yes, the responses are too overwhelming to ignore. There is a genetic link to visual snow. Many of us living with the condition, who are parents already, are terrified that we have passed this along to our children. Then there are those who haven't had children yet who are too scared to in fear of passing along the condition. More and more parents, and even the children themselves, are joining the support group for visual snow on a weekly, sometimes daily basis. We see young kids coming scared, looking for answers, and treatment, that can't be offered to them.Primary Symptoms of Visual SnowChanges in vision include:
seeing television-like static across the entire visual field 24 hours a day, 7 days a week - even with your eyes closed (visual snow)
seeing millions of silver specks flashing and moving everywhere in the sky and bright surfaces (entopic phenomenon)
looking at your hand, and then looking away and still seeing your hand for several seconds even though you are no longer looking at it (after images)
seeing the vitreous inside your eye breaking down with gray, black and clear cobwebs, clouds, spots and strands (floaters)
colors fade away (low contrast sensitivity)
looking at a sentence and seeing the same words you are reading floating on top of the text you are looking at (ghosting)
seeing a moving object's motion after it passes your eyes (trails)Other visual symptoms include:
night blindness, light sensitivity, flashes of light, glare, halos, starbursts, dry eyes, blind spots, vision blacks out with one eye closed, yellow-tinted vision, double vision and loss of accommodation.Changes in hearing include:
constant ear pressure (this would be the feeling of needing to pop your ears on an airplane) and ringing of the ears (tinnitus)Changes in thinking and the brain:
migraines,a feeling of watching oneself act, while having no control over a situation (depersonalization), a sensation that the world seems unreal (derealization)Changes in the body:
numbness, tingling, twitching, vertigo and dizzinessHope
Three years ago, eyeonvision.org, collaborated with two neurologists (Dr. Schankin and Dr. Goadsby) who became committed to finding a treatment to visual snow. They set up the first visual snow study ever. The results of the study were released in May 2014 and the doctors believe they have found the area of the brain where visual snow is coming from. Visual Snow Study
Goadsby and Schankin have found a doctor to work FULL-TIME for Visual Snow research. This is HUGE! When we initially started raising the research money we were looking at having a doctor work on VS research maybe 1 out of every 5 business days. Now we will be able to have a research doctor work on this all the time.
Currently the study is accepting German speaking patients. English speaking patients will follow soon.
If you suffer from visual snow and want a chance to participate in the next phase of research (located in London, England and Munich, Germany), please go here for the application: Apply Today Our Goal
We are reaching out to supportive people like you to help us raise $75,000 through GoFundMe in time to support the next phase of research into visual snow. All funds donated will go towards the research efforts to find a treatment for the many who are suffering with this condition every moment of their lives.
Since July 2014 we have raised over $65,000 through GoFundMe and we continue to work day in and day out to raise funds through grassroots efforts. Every dollar that we receive makes a difference. Every single dollar counts!
We cannot afford to give up because no one else in the world is raising money for visual snow research. No one - anywhere. You and I are it. Please become part of this movement to find a treatment or better yet a cure.Please Act Today
What would you do if you or a loved one were diagnosed with an untreatable condition?
Then you learned that the only research in the world being done for it was out of funds...
I hope that you would do everything in your power to raise those funds, to fight for yourself or your loved one.
There is no government support for this, no grants, no celebrity spokesperson, no viral YouTube video - it is just you and me.
Every dollars counts more than you know, but even if all you can do is forward this link to as many people you know, or share this campaign on Facebook, you will be making a huge difference.
Help Cure Visual Snow (GoFundMe) was created as part of our own non-profit 501c3 Eye on Vision Foundation (Tax ID: 20-5394501) There are no paid employees or personal medical expenses taken from the foundation. All donations made here are tax-deductible.
Other donation options: http://eyeonvision.org/donate
Help us please.Facebook Group
We are beginning a new "Facebook Themed" donation drive through the Eye on Vision Foundation for Visual Snow Research!
We have started a secret Facebook group for supporters who have made a donation of $5 or more (beginning August 22, 2015) to the Eye on Vision Foundation to support Visual Snow Research.
For every 100 new members we recruit, I will personally request a research update from Dr. Schankin and/or Prof. Goadsby.
All donations no matter how big or how small are always needed and appreciated! We are hoping that this is a way for those affected most by VS can come together!
Once your donation of $5 or more has been received, I will personally send you an email and ask if you would like to be added to the group. No one will be automatically added unless I have your interest and consent first.
Founder and President of The Eye On Vision Foundation
"LIKE" us on Facebook EyeOnVision EyeOnVision.org http://www.gofundme.com/visual-snow