Hi. My name is Jennifer Ambrose, and I have spent the last 16 years of my life seeing static and other visual disturbances every moment of every day. I can see the veins within my eye, floaters, my eyelashes, ghosting images, glare, starbursts, halos, trails and so much more. I cannot see what my children look like to the rest of the world. I’ve only seen them, and everything else in my life, through this warped vision with persistent static overlay. My body has tremors, twitches, my limbs get heavy, numbness, brain fog, derealization and my ears ring. This is all part of an incurable and untreatable neurological condition called Visual Snow Syndrome (VSS).
In 2006, I founded the Eye on Vision Foundation (EOVF), a non-profit, tax-deductible 501(c)3 organization, to find a treatment for VSS. In 2012, the EOVF foundation raised the funds for the first ever VSS study, which was published in 2014: Study Link , conducted by Dr. Schankin and Prof. Goadsby. This ground-breaking study gave VSS sufferers a formal diagnosis for the first time, and led the NIH to formally recognize Visual Snow Syndrome as a rare disease: Rare Disease Status . We have also worked with Dr. Puledda, and Dr. Sadun, and we recently funded Dr. Pelak’s TMS clinical trial in October 2021.
The EOVF foundation (Eye On Vision's Website ) has another opportunity to fund a critical, groundbreaking research study led by Dr. Fielding of Monash University in Australia. This research is our best chance for a targeted VSS treatment, and we need YOUR help. Government funding for rare diseases like VSS is practically non-existent, because the government focuses on illnesses that affect the largest number of people. VSS researchers rely on smaller organizations like EOVF to finance their important small scale research studies. In turn, EOVF relies on patients afflicted with VSS and their families, friends and members of their community for donations. It is very much a grassroots effort.
This is where YOU come in! Your participation is vital to helping us cure Visual Snow Syndrome. Your money ALWAYS goes straight to the researchers. EOVF does not use any of the donations received for administrative costs and takes no salary. Every dollar goes to research.
So many of us with Visual Snow Syndrome cannot work, drive, go to school, read books, watch TV, enjoy going outside, go to the movies, the list just goes on and on. To say that quality of life is impacted is a huge understatement. This condition takes over every moment of every day for a person with VSS. There is not a single solitary day, minute or second that goes by that your symptoms aren’t with you.
We have hope, but what we need now is action! More scientists and researchers have begun to take an interest in Visual Snow Syndrome, and they want to help find a cure. This takes time and money, a lot of money. Now the clock is ticking to raise the funds and collaborate with the neurologists in Australia to make this happen as quickly as possible. Precious time has already been lost during the Covid pandemic where research could not take place as patients couldn’t travel and facilities were closed to non-essential procedures.
Today we are reaching out to you to ask for help. Whether you are afflicted with Visual Snow Syndrome, love someone who is, or just feel called to help a group of people who need you, please donate today.
Two EASY steps how YOU can help!
1) GIVE whatever you can today. No donation is too small (all donations are tax-deductible)
2) SHARE this campaign on your social media and make sure to use the tag (#cureVSS)
By sharing this campaign once it is historically shown that will lead to at least $13 more dollars in donations! Imagine if you committed to sharing this 5 times! That would mean $65 more in donations could be generated just by your willingness to help us spread the word.
We need each and every person who sees this campaign to come together for one common goal. Please help to put an end to this nightmare and donate what you can. Time is crucial here and running out quickly! Thank you so much for your support and willingness to step outside of the box and support finding a cure for a rare disease. We can reach our goal and help so many people, but only with your help.
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