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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
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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: |
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.
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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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Patients have begun to be recruited for the imaging study in London, England. Within the next two months we hope to see the first patients being scanned for the MRI study. Continued funding is asked for as we are just in the beginning phases or research and want very much to see it continue. It costs almost $80,000 USD per year to employ one research doctor. 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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A
communication to all Visual Snow sufferers participating in the London
Questionnaire Study on Visual Snow Thank you for your extraordinary interest in the London
Questionnaire Study on Visual Snow! So far, we have been in contact with over
450 subjects, who expressed interest in participating in our research on this
disabling condition. We have emailed the documents for the study including two
questionnaires to a large number of you. To date, however, only 67 have returned
both documents. This is neither a representative sample of the 450 subjects nor
is it sufficient to understand the condition Visual Snow in detail. Direct participation from the Visual Snow community is extremely
important for our goal to advance research and with it treatment of this
problem. With this update, we would therefore like to invite all subjects to help
us by returning their questionnaires as soon as possible. We believe that this
study will gain significant important information on Visual Snow, but only if
we are able to reach a substantial and meaningful number of participants. Thank you again for your help and collaboration!
Professor Peter J Goadsby |
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