Meet the Founder of vamp2.org

In 2018, the first case of a VAMP2 genetic variant was diagnosed in the United States. VAMP2 is now understood to cause neurodevelopmental disorders, such as visual impairments, movement disorders and epilepsy.

This site was created to spread awareness of this rare disease, advocate for the cause, help drive research into the disorder and ultimately look for therapeutic interventions.
As time goes on, more cases will be diagnosed. 

We as parents continue to remain positive for our children's future and hopeful for a cure. If you or a family member have been recently diagnosed, please join our closed Facebook group, "VAMP2 Gene Mutation" for support.

On behalf of all VAMP2 families, I thank you for visiting this site and showing interest in our stories.

By registering your child/children with VAMP2.org, it provides valuable information that will help us better understand the progression of the disease. It will allow us to keep you informed through email updates toward developing a treatment plan. This is completely optional. Regardless, you can join our Private Patient & Family Facebook Group.