About Us

Redefining Spina Bifida is a non-profit organization comprised of photographers, writers and advocates who have united to work towards a common goal – to redefine the world’s perception of spina bifida. Currently all contributing photographers and writers are directly affected by spina bifida and know first hand the challenges families affected by spina bifida face. Sadly most of society still isn’t aware of this birth defect and most who learn about spina bifida often fear the worst possible outcomes. We aim to share share real moments with babies, kids, and adults living with spina bifida to offer a glimpse into the trials and triumphs faced living with this birth defect. We're hopeful that together we can help transform the world's perception of spina bifida.

Mission Statement

Redefining the world’s perception of spina bifida through photography and stories to offer advocacy, education, and support.


To redefine the world’s perception of spina bifida.