Help Cure Visual Snow
We NEED your help.
The Eye on Vision Foundation 501(c)3 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 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. Then I underwent another worsening in 2016.
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.
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 Snow
Changes 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 dizziness
Four 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
In 2015-2016 Eye on Vision Foundation funded a German study into Visual Snow led by Dr. Schankin. The results of this study should be released at the end of 2016.
Prof Goadsby is now putting together a new phase of research to take place at King's College London, England. It is our hope that this imaging study will begin in late 2016 if funding can be secured by EOVF through generous donors like yourselves.
We are reaching out to supportive people like you to help us raise $570,000 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 $80,000 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!
Please note that $50,000 of the GoFundMe dollars raised that you see in our totals were used to pay for the study in Germany.
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.
Founder and President of The Eye On Vision Foundation
"LIKE" us on Facebook EyeOnVision
We will be hosting an online charity auction to raise funds for the Eye on Vision Foundation and continued research into Visual Snow Syndrome.
The auction will take place on August 18th at 11AM EST and end at 12AM EST that same night.
100% of proceeds will go toward Visual Snow Research!
Please join the event auction group here:
Most importantly, we are seeking item donations from you. Donated items can be handmade goods, a new item collecting dust in your closet, new clothing, gifts cards, etc., etc. You can ship the items directly from your home to the winning bidder. If you would like to donate an item(s) please use the form below and I one of us will contact you about your donation.
Thank you so much for your support! We can't do this without you!
I recently asked Prof Goadsby for a cost projection for research, so that we can plan ahead with our fundraising goals for visual snow research. I'd like to summarize for you the plan.
The main goal of the current research planned for London is to have a reproducible MRI signature of VS that will be a basis for drug mechanism studies. It is crucial to get the linked biology sorted going forward to move into the treatment phase. We already know that the visual cortex is involved, but we need to have more basic scientific research done. The current timetable that we are looking at is 18 months for the MRI study from start to publication.
I asked Prof Goadsby the million dollar question, "will VS be treatable" and he is absolutely certain that it will be. Think about this for a moment. A world renowned neurologist, and VS researcher, thinks without a doubt that we can be treated. This is amazingly promising. Now we need the funds in place to move the research forward to the treatment phase of research.
Over the next three years we have an approximate minimum funding need of $270,000 for Visual Snow research. This will get us one researcher. Ideally we want two researchers on this full time. We are looking at about $520,000 over three years. Because we have already spent $50,000 of the total seen in the GoFund Me total, we are setting our new goal at $570,000. That would be $520,000 for new research, plus reflect the $50,000 spent for the German phase of research.
The greatest cost is people-power.
It costs approximately $77,000 USD a year for a medical person (salary plus various costs assuming exchange rate at $1.45 = £UK1).
Medical research is very expensive and we are so fortunate that we have Goadsby and his resources at King's College. Honestly without these important connections the costs would be even higher.
While raising over half a million dollars seems like a large mountain to climb, I'm confident that we can do this. Three years and I know that we will get our treatment.
Please if you are reading this message take a few moments to 1) Donate and 2) SHARE our campaign. We need to get this to go viral and we need your help to do that!
I am challenging all of our donors out there. I'm matching all donations made by tonight 11:59 pm est. Since I issued this offer in our Visual Snow FB support group we have received almost $1000 in donations. If you were thinking of donating, today is the day!
*** All donations will be matched and issued by my personal check to EOVF up to $20,000 ***
Founder and President of The Eye On Vision Foundation
"LIKE" us on Facebook https://www.facebook.com/EyeOnVision
Thank you for taking a few moments of your time to read our latest update.
About a year ago, my daughter, Kaitlyn, asked me if I even had visual snow anymore. Her question stopped me in my tracks. Of course I still had it. It affects every action I take every day of my life. What an odd question I thought that she would ever ask me. I thought about her question all day and night and realized that over the years I had become a very good actress. Because VS is not something that can be seen on the outside, if you get good enough about "faking normal" you will seem normal. Because no one can see what I see they just look at me and think that I'm "ok."
I've actually been getting progressively worse. Most recently I'm declining again as of April 2016. There is never a moment of the day that I don't have extremely altered vision. I've had this for 11 years now.
Through Eye On Vision I come across many other sufferers with the condition. Some are far more symptomatic than others. Recently I came across Jack Lea, and I wanted to share his story with you.
My heart goes out to Jack and every one with Visual Snow, because it takes our quality of life and puts it through a shredder and tosses the scraps back to us and we are left to deal with it all on our own. There is no doctor we can go to, no medicine to take. We have one thing to hold onto - HOPE FOR MORE RESEARCH.
This is where you come in. We NEED your financial support. Eye on Vision Foundation is solely supporting this research and we cannot do it alone. We have a very large goal that needs to be met. Please consider helping us today.
All money donated to this link will go towards visual snow research:
One of the most common symptoms seen with Visual Snow Syndrome are eye floaters. This is a physical breakdown of the eye itself and is not neurological in nature. Because Visual Snow research is based in the neurological field, we started an independent fund for vitreous floaters research. We have an opportunity to support very important floaters research once our funding goal is met. Please consider making a contribution to help us make that goal.
Anna, please remember that there are very varying degrees of Visual Snow, some people find it completely life changing, particularly those who were not born with it. Since onset I have had a migraine headache every day of my life and my vision has been severely affected. This has changed the path of my life drastically and caused depression and anxiety to worsen tenfold. Please spare a thought for those with VS who have not been as fortunate as you.
I met with my doctor this morning and one item was my large floater. I told him and showed him that I was testing a magnetic field pulling the floater to one side of the eye. It's not original, others have tried a magnetic on one side of the eye. I'm getting about a 20 to 30 percent improvement over 8 weeks of testing. He is going to provide a serious case of floaters (patient) for me to test along with me at no charge. It's a very inexpensive solution. The only thing I've done new was to increase the magnetic field with much higher energy magnets. ( very small). This ends up on the glasses and invisible with dark glasses. I told him, I want the worse case he has.
I got visual snow over a year ago. Mine was caused by Chronic Inflammatory Response Syndrome (otherwise known as Biotoxin Illness). It has gone down considerably with treatment although I still have floaters and tinnitus. It's diagnosable with bloods tests which my insurance covered. My body is in a constant state of inflammation because of exposure to either lyme or mold or both. It is genetic in that I have a gene that doesn't allow me to detox properly from the biotoxins that mold or lyme produce. I have to detox the biotoxins in order to get better. I'm just starting the Shoemaker protocol which should help alot as well as getting my house tested for mold and I'm wrapping up my treatment of lyme disease. It took awhile to figure this out as there are only a handful of doctors who treat CIRS.
I thought I was going insane until I discovered VS. I can't tell if it's worsened significantly the past few months or if I'm just now noticing how truly bad it is. I also am nearsighted, so my vision is horrible. I wear glasses but I need new ones. I usually see dark static with colors occurring as well. I see floaters, ghosting, afterimages, halos, starbursts, etc., which are worse when I'm wearing my glasses (as I said before, I truly need new ones, but I can't afford it at the moment). I also struggle with anxiety and derealization/depersonalization. My anxiety makes me overthink this and I am struggling. It's like torture to have endure this everyday. I really hope they find a cure, or at least some sort of medicine we can take to make the symptoms less intense.
Hi I would like to no duse your charity have a bace in the UK as I would like to try help ad I have found out in past 5 days what visual snow is seems I have had this all my life I found out in past cople years I also have dyslexia and irlens syndrome and just attributed all my symptoms to that seem that I was in error so if I can help in the UK please let me no I would like to try help raise awareness in the UK to try help the people that don't no like I didt
I have had VS my entire life, and no one ever believed me. Ever since I was a little girl I complained about it. I even told my doctors, but my parents and my doctor just assured each other that as a child I had a creative imagination. Now for 21 years I have lived with it, and it is only slightly worse. I wish I could make a donation to put in, but at the moment I am unable. Hopefully in the future I can help make a difference. But for now I hope this doesn't get worse, and I pray for you and what you are going through! Stay strong. I know there are people out there who will make this happen!
Wish I could donate all the money I wasted at doctors, neurologists and specialists who all say there is nothing they can do. So pissed!
David, you can donate through eyeonvision.org with PayPal or you can mail a check to the Eye on Vision Foundation. Here is a link to the donation options: http://eyeonvision.org/donate
You ask if genetics plays a role in VS it sure does in my Case my mother she is 64 has VS and My Grandmother of 84 has it all Started being Born with Migraine Aura's! But progressed into VS over time with all of us I am so glad we made the 50 grand..And Thanks to everyone that helped this is a life changer for us all :)
This is going to happen! We can do it!
We're getting there together. Great work everyone!
Great work! and thanks to all the people helping with your Donation..This is going to help a lot of us VS people move forward! Just by this we now have a voice to not have our medical condition not over looked anymore our brushed under the rug anymore! And I hope soon we don't have to do this and can get government grants for our condition as well as a cure in time! Again I want to thank everyone that has helped..This is the best gift anyone can ask for!
9 days you are doing great. It will get there. Good luck for everything, research and diagnosis for you. You deserve it.