American Nystagmus Network, Inc

hello everyone! For Nystagmus November, I’m raising money for the American Nystagmus Network as the challenge of nystagmus is very close to my (and my family’s ) heart. For every donation you make, I’ll learn the song you requested and play it on my IG account that week. Thank you for all your support and if there is enough interest, maybe we will just keep going after the holidays! Suggest your songs with your donation and I will try to learn them!

Almost every day, a concerned parent notices their child’s eyes moving in an unusual, back and forth motion. They take their child to the doctor, who runs a battery of tests, looking for scary diseases or brain tumors. After finding none, and landing on a diagnosis of infantile nystagmus, the doctor sighs with relief and sends the parents on their way. Possibly with a shrug and “there is nothing we can do”, because there is no cure. The parent is left to fend for themselves, with a child that might have a significant visual impairment, that glasses cannot fix.

Nystagmus is an involuntary, repetitive eye movement that usually results in some degree of visual loss and may be associated with other conditions that limit vision. The degree and direction of eye movement, amount of visual loss, and resulting impairment vary greatly from person to person. Nystagmus may be one of several infantile types or may be acquired later in life.

Infantile nystagmus is considered a rare disease, although estimates of the prevalence can be as common as 1 in 1000. So, it does not get much attention from the medical research community, even though it actually affects many people. Enter the American Nystagmus Network, a 501(c)3 nonprofit that strives to raise awareness and to advocate for research. Our mission is to improve the quality of life for all persons and families affected by nystagmus, through organized community support, education, public awareness, and research.

We are organizing a dedicated nystagmus research workshop that will bring together 15-20 international researchers to share their studies and findings related to nystagmus treatment and interventions. The collaboration among the disparate researchers in a very niche research field is unique, and it will hopefully push research forward and enable breakthroughs in treatments for nystagmus.

Please help us make this event happen. It is surprisingly expensive to book event space, hotel rooms, food and supplies for a small group of researchers. That is, all the mundane things that are required to let the researchers do great things. Help us support all those parents who are told, “there is nothing we can do”.

Donate today—and be part of a brighter future.