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SaraSara

Important Research News !

12 posts in this topic

The Visual Snow Syndrome study carried out by Dr Goadsby is close to starting a treatment phase of research .  Yesterday Jen Ambrose posted an update ongofundme :

https://www.gofundme.com/visual-snow 

 

 

'' Hello Eye on Vision Supporters!

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

Thank you, 
Jen Ambrose

 

Please everyone make donations!! I know you guys got visual snow syndrome from drugs ( just as the forum info section itself says : drug induced visual snow syndrome ) but the symptoms are the same . A cure could be on the horizon if we start making donations!!! I've posted links about few other rare diseases that have found cures( or are close to finding one) purely by making large donations and not giving up . This is what patient determination and donations can do : 

https://www.hippocraticpost.com/innovation/gene-therapy-nervous-system-disorders/

https://www.technologyreview.com/s/603832/determined-parents-are-moving-the-needle-on-gene-therapy/

there are some other articles I came across a while back but I don't have the time to search for all of them again . However I hope that the above articles will inspire you to make donations for the visual snow syndrome research. It's the only option we all have left now !!!

 

Edited by SaraSara
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Thanks for this Sara. I hope people donate. We can't all sit here and complain and then when we have an opportunity to do something just turn our heads the other way. 

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I've never had visual snow, but apparently many people with hppd do.  It's heartening to see someone doing research in that area.  Thank you for posting.  

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U mentioned in ur other post that u attend Louisville uni which is in the US meaning u can't participate with the treatment/medication testing unless ur willing to travel to UK and stay here for a while . For more details u have to contact Kings College University London : 

 vs-research@kcl.ac.uk 

The main thing right now is raising enough money 😩Or else we can forget about the research and a cure . We are extremely behind from 70.000 dollars .

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@TheMythos if ur on the fb visual snow group please repost this , including those links I added about other rare diseases that are close to finding cures with the help of massive patient donations . Vs and hppd patients need to get inspired 💪🏻 Together we can hopefully find a cure!! I'm not on fb anymore ... unfortunately I can't handle looking at pictures😩 ... they look pixelated ever since I got vs and photography was a passion of mine😢

Put some additional inspirational and motivational arguments why ppl should donate. None of us is completely safe not even ppl with mild versions . Vs can get worse any second even if was stable for decades( Jen Ambrose herself had mild version until she was 27 ) Remind them why it's so important to donate money into research . Another thing I've noticed is that many vs patients think that fmri was already done in 2014 which is wrong . That study was carried out with PET scans . Fmri has a better resolution and will give us more insight. Another thing to add is that research is going slow due to lack of funding not because of the researchers!! 

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Just thought I'd post this video since its apt to the discussion at hand and mentions the site Sara has linked to above:

 

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I've made this post sticky... Sounds like great work, so far. Let's all get donating!

If you need anyone from the UK for the test, i'm happy to do it... My VS is more like a blizzard

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Thank u Jay☺️. To participate with the study u need to contact King's College. I know that they want as much data as possible ( they literally want to estimate how many ppl are suffering from this condition and how rare or common it is ) but I don't know how many ppl they need for the treatment/medication testing phase . 

Usually when u first contact them , u need  to give ur fullname , address ect and u need to describe all ur symptoms ( how ur vs exactly looks like ,the colour , shape , density , additional symptoms such as palinopsia ect ) . They also would like to know which medications had positive or negative effect on ur vs . 

U can find the questionaire on the EyeOnVision website . If u can't find it let me know . I'll post it on here .

I do have to add that asking about the medication phase of study is too early at the moment due to lack of funding. I don't think they will respond to those questions right now . We will know more after the fmri results .

 

 

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Here are the links to the visual snow studies mentioned in the video above:

'Visual Snow' -- a disorder distinct from persistent migraine aura 

https://academic.oup.com/brain/article/137/5/1419/334357/Visual-snow-a-disorder-distinct-from-persistent

Visual snow: A thalamocortical dysrhythmia of the visual pathway?

http://www.jocn-journal.com/article/S0967-5868(15)00653-0/abstract

Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography

http://www.pnas.org/content/96/26/15222.full

Thalamocortical Dysrhythmia: A Theoretical Update in Tinnitus

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4460809/

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Yeah I read something similar to this . Thank u for sharing these links . I just hope that whatever it is they'll manage to cure it as soon as possible🙏🏻.

 

 

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