About Us – ONH Awareness

Our Community

ONH Awareness is a charitable non-profit organization created to provide support to families and individuals affected by Optic Nerve Hypoplasia (Septo Optic Dysplasia.)

Founded in 2007, ONH Awareness was originally started by Dallas Perez as a Facebook page looking for parents and families who could relate to getting a new diagnosis. As the group quickly grew, she realized this was much more than one parent looking to know she wasn’t alone. We have grown into an organization with over 4,000 families in over a dozen Countries. In 2014, we created and secured copyrights to our awareness ribbon (see below) which has now been circulated globally. We are proud, in 2021, we obtained our 501(c)3 Non Profit status.

ONHAwareness.org’s mission is to provide resources and support to families and individuals all over the world by providing grants, assistive equipment, educational programs, and social opportunities to individuals and families living with optic nerve hypoplasia.

Our Logo

The Meaning Behind It

Green – general blindness

Red – the white cane

Purple – epilepsy

Grey – brain abnormalities

Yellow – developmental delay and the overall brightness our children bring to our lives

The dots represent Braille. At the top of the ribbon they start out bold and fade as they go lower. This is to show the variation in each child’s vision. Not one child is the same.

We understand that not every child is affected by each color listed, but ONH/SOD as a spectrum has many components. We wanted to make something that allowed us to represent our children as a whole, as a community, and more importantly as a family.

Optic Nerve Hypoplasia versus Septo Optic Dysplasia

Septo Optic Dysplasia is the historical term for this condition. In the past when the diagnosis was initially being researched, doctors didn’t know the condition was related to optic nerves. Instead, they focused on studying brain abnormalities in patients. Later on, however, researchers realized that everyone with this condition had smaller optic nerves, but not everyone had brain abnormalities. Because of this, optic nerve hypoplasia is more widely used today since it refers to the condition more inclusively. Some doctors do still use both terms to refer to this condition, though.

our team

Learn more about the caring people behind ONH Awareness