What The Experts Are Saying

“Ten years ago, in 2012, we presented work at a neurology meeting systematically describing why Visual Snow was not simply migraine aura and was a distinct disease entity. This was not received with universal acclaim, to say the least. In the intervening period, visual snow has come in from the medical ‘cold’ and is being studied actively by a number of groups on three continents. The recognition of the condition, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. I realize to the many with this often very disabling condition that it seems nothing has or is being done. Progress to treatment is never fast enough nor advances to recognition and understanding. With that said, visual snow research would be idling in a backwater where it not the Initiative. Going forward, we need to double, re-double, and re-double again our efforts for the search for effective treatments and, one day, a cure. Thank you for the Visual Snow Initiative for all you have done and continue to do.”

“Visual snow syndrome is a debilitating condition that has already been existing for decades. However, due to the lack of structural changes in the eye and brain, patients have often been misdiagnosed. The Visual Snow Initiative, were able to contact clinicians and initiate first research. This was the starting point of research resulting in (i) the definition of criteria for visual snow syndrome that are now used all over the world and (ii) an enormous increase of our understanding of the underlying mechanisms. The Visual Snow Initiative is a crucial player in all aspects, i.e. in raising awareness, promoting education, and – importantly – supporting and coordinating research. Only with research, we will finally be able to find an efficacious treatment for the debilitating condition. In the arrangement of patients, their relatives, clinicians, and researchers, the Visual Snow Initiative is the key player dedicated to improving the well-being of affected individuals.

“Almost single-handedly, the VSI has educated patients to understand that they have a true disorder. They have played a pivotal role in bringing together both the Visual Snow patients group and researchers.”

“The VSI has been instrumental in raising awareness and acceptance of Visual Snow Syndrome as a neurological condition, educating patients about their disorder, and kickstarting the efforts made by researchers to understand what underlies their myriad of visual and other sensory symptoms. The work initiated by VSI has ensured that physicians and ophthalmologists are now mindful of the constellation of symptoms that define the syndrome, ensuring that patients’ concerns are not dismissed and that patient resources are now available.”

“The VSI has played an incredible role in the advancement of VSS awareness, education, and research. I have had patients who, in 2021, made their own accurate diagnosis of VSS on the basis of their information. And I am able to use the VSI’s webpages as a trustworthy resource that allows my patients a place to land for information after the diagnosis.”

“VSI has been pivotal in supporting the cure of people with VSS through education, awareness, and supporting research in this field. VSI has also facilitated research collaboration and discussing globally amongst VSS researchers. I’m grateful for the support from VSI and the donations to the VSI and the support of people with VSS will be most appreciated.”