Eye On Vision Foundation

EOVF

 

What is Visual Snow?

Visual Snow is a condition that appears similar to static on a television set, appearing across the entire visual field. Learn more ...

What are Floaters?

Floaters are a condition characterized by the appearance of specks, or spots appearing either intermittently, or constantly across the visual field. Learn more ...

What is Macular Degeneration?

Macular Degeneration is a visual disturbance that can result in loss of central vision, which often entails inability to see fine details, to read, or to recognize faces. Learn more ...

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VISUAL SNOW interviews with Dr. Schankin from UCSF in 2011 and 2012

To all patients, who have participated in the telephone interview study on VISUAL SNOW with Dr. Schankin from UCSF in 2011 and 2012.

 

Dr. Schankin is now working at Bern University in Switzerland. He is building a research group on visual snow. Together with his colleague, Dr. Scutelnic, they are continuing with research on visual snow and would like to re-contact ALL participants from the interview study done in 2011 and 2012!

 

They would like to understand how your symptoms have developed in the last years to conclude, which factors might influence the evolution of visual snow.

 

All participants who agreed to be contacted again in the previous study have already been contacted by e-mail.

 

Unfortunately, only a small proportion (less than 30%) has replied so far!

 

To be able to understand the development of visual snow over the years, it would be of great importance to obtain information from as many participants as possible from the initial study. The answer to this question is of great importance for patients and for doctors, since this will allow – for the first time ever – informing patients about therapeutic options and natural course based on evidence!

 

If you would like to continue helping with research on visual snow…

-       …please check if you have received an e-mail from:  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  (please also check your spam folder) or

-       …please send an e-mail to  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  to let us know how to reach you

 

To illustrate the importance of your support: Prior to 2011 (the start of your previous study), there were about 5 publications per year on visual snow. With your help in the previous study, the number of publications increased continuously every year with 25 in 2017 (see histogram, from https://www.ncbi.nlm.nih.gov/pubmed).

 

 

And: Visual snow has been recognized by the International Headache Society as a new disease in the appendix of the International Classification of Headache Disorders 3rdedition (https://www.ichd-3.org/appendix/a1-migraine/a1-4-complications-of-migraine/a1-4-6-visual-snow/). This gives a diagnosis for all patients affected and a clear target to be addressed for future research!

 

Thank you for your support - your help is crucial to advance research on visual snow!

 
July 2018 Update - Visual Snow

Visual Snow Research – Where we were, where we are and where we are going

 

No matter if you have a mild case, or a severe case, Visual Snow is probably never far from your mind. It is definitely not a condition that is easy to escape because we see it everywhere. If you are like me, you want research to move faster and have more information coming in. Trust me, I feel you! It’s so hard waiting and waiting days, months and years.

 

Here is what we know right now:

https://onlinelibrary.wiley.com/doi/full/10.1111/head.12378

 

Here is an excellent link to search “Visual Snow:

https://www.ncbi.nlm.nih.gov/pubmed/

 

For the current MRI study being conducted in London the doctors have scanned 15 patients and 12 controls.

 

As far as the diary/questionnaire study there have been 1100 patients contacted and asked to participate, and only 150 have returned the information asked for. This phase of research has taken a back burner to the MRI at this point. If you are still interested in participating, they are still taking applicants, but it may take some time to receive a response back from the doctors. You can find information on how to apply at http://www.eyeonvision.org

 

What does the near future hold for research?

 

Dr. Puledda, Prof. Goadsby and team are moving forward with a study involving genetics and cerebrospinal fluid analysis for visual snow but are still waiting for ethics approval for that. It took a very long time to receive approval for the last phase of research, so we are in a wait and see period.

 

What can you do to help?

 

Currently visual snow test subjects have been coming from the London, England area, so if you are in that area, you can play a crucial part to the research, potentially. Please reach out to me, Jen Ambrose, if you would like to be in touch with the doctors and are in or near London.

 

If you are out of the area, we are looking for financial support to help continue the research. Medical research in expensive and lengthy, and Eye on Vision Foundation has done it’s best to support the research, but funds have dwindled greatly over the past few years, and this has caused delays in research. The more doctors assigned to the research the faster it will move for us. Donations can be made on a one-time or a monthly basis through http://www.eyeonvision.org. You will see a PayPal link. Remember that this is a tax-deductible donation as we are a non-profit. All donations will go straight to the research. There is no overhead for Eye On Vision, so all monies are donated to the research.



 
Update on VS Study

Hello Visual Snow and Eye on Vision Supporters, 

Patients are actively being recruited for the imaging study and three subjects have completed it to date.

The questionnaire study has received several responses back, but not nearly the amount of responses back that we need. Please, when you receive the request to complete the diary, please complete and send back via the instructions. The first questionnaire that you send back is only part one. When the doctors write you back, they will need you to complete part two and send that back as well. I will include part one here again for those who have not completed this yet.

f you have visual snow syndrome, please send the information below to This e-mail address is being protected from spambots. You need JavaScript enabled to view it , and you will receive an email back with information regarding the study! 

Please provide the following information within your email:

Name

Address

Date of Birth (Day/Month/Year)

Telephone number


1) Please make a brief statement that you are willing to be contacted for research. This is a European data protection issue. 

example: 
"Yes, please keep my contact details and you may contact me for research purposes."


2) Brief description of all symptoms you relate to visual snow syndrome. 


3) Date or age when your symptoms started.


4) Visual snow: what type (chose one):

- black and white (i.e. only black dots on white background, white dots on black background)

- clear (i.e. color of the background)

- flashing (i.e. always white, brighter than background)

- colored

- all of these


5) Other symptoms (please only answer yes or no)



- After images

- Trailing of images in the vision

- Blue field entoptic phenomenon (i.e. white squiggly lines moving pulsating on the blue sky)

- Floaters in vision

- Colored clouds or waves with eyes closed

- Flashes of light

- Impaired night vision

- Sensitive to light

- Tinnitus

6) Have you ever been diagnosed with migraine or have you had a headache of moderate or severe intensity in the past? ( Please answer yes or no)


7) Have you ever taken any illicit drugs in the past?





Here is the email once more for you: This e-mail address is being protected from spambots. You need JavaScript enabled to view it


 
Patients Needed for Visual Snow Study in London
If you have visual snow syndrome, please send the information below to 

 

Please provide the following information within your email:

Name

Address

Date of Birth (Day/Month/Year)

Telephone number


1) Please make a brief statement that you are willing to be contacted for research. This is a European data protection issue. 

example:       
"Yes, please keep my contact details and you may contact me for research purposes."


2) Brief description of all symptoms you relate to visual snow syndrome. 
   

3) Date or age when your symptoms started.
 

4) Visual snow: what type (chose one):

-          black and white (i.e. only black dots on white background, white dots on black background)

-          clear (i.e. color of the background)

-          flashing (i.e. always white, brighter than background)

-          colored

-          all of these


5) Other symptoms (please only answer yes or no)


-          After images

-          Trailing of images in the vision

-          Blue field entoptic phenomenon (i.e. white squiggly lines moving pulsating on the blue sky)

-          Floaters in vision

-          Colored clouds or waves with eyes closed

-          Flashes of light

-          Impaired night vision

-          Sensitive to  light

-          Tinnitus

6) Have you ever been diagnosed with migraine or have you had a headache of moderate or severe intensity in the past? ( Please answer yes or no)


    7) Have you ever taken any illicit drugs in the past?



    Here is the email once more for you: 

     
    Explanation of VS study in Germany



    Many of our donors have asked for a little more explanation of what the German visual snow study was looking for, which we helped to fund in 2014. I recently wrote to Dr. Schankin and this was his reply:


    With that study, we investigated the processing of basic visual information in the brain of patients with visual snow. The aim was to see if we can find objective electrophysiologic data for the condition that might serve as measures for future treatment studies. This is important since - in contrast to radioactive brain imaging that we did before – these tests can be repeated.

     

    The results of this study need to be reviewed during the meeting and by colleagues before any clinical application can be designed. 


    It is Dr. Schankin's hope that colleagues will be able to look at the data this coming September. 


    While every part of Visual Snow research is crucial to better understand this condition, we are still in the very early phases of research. More financial support is needed in order to continue through the necessary phases of medical research. Please consider supporting us today. We still need almost $50,000 more to ensure that Dr. Puledda's salary is covered for another year. Without this money the research will have no funding to continue. 

     
    VS testing to begin in London in May 2017


    I'm sorry that there was such a long delay in hearing from me, but I sustained an eye injury in Feb and am only recently returning to limited computer use. 

    I do have an update from London to share with you. Patients have begun to be qualified and scheduled for testing. Scans are scheduled for May and June at King's College. This is an important phase of research, because what is learned from these scans will determine how we enter into a treatment phase of research. Without this phase of research, we will not be able to proceed to medication testing. With that being said, I've been approached about funding for Dr. Puledda's salary for another year. Dr. Puledda works under Prof. Goadsby and is the primary doctor assigned to the Visual Snow research at King's college. As stated in previous updates we need approximately $70,000 USD per year to employ her. Currently we have only raised $20,000 USD which is a far off sum from what is actually needed to secure her. 

    Almost all of you reading this who have VS have likely undergone an MRI. You have likely seen the very high bill to your insurance, or you have paid out of pocket. It's not uncommon to see bills over $1000. We are very fortunate that King's College covers all of these costs towards VS research. We need to assist them though by being able to pay Dr. Puledda for her time and efforts on our behalf. 

    We would love for you to become a monthly donor and help us achieve our research funding goals. You can sign-up as a monthly donor here:

    http://eyeonvision.org/donate-to-the-eye-on-vision-foundation.html

     
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