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.htmlThank 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 !!!