The Heart of A Race Against Blindness: Our Story, Our Mission, Our Impact

At A Race Against Blindness, our mission is personal. We were founded by Kristina and Stephen Johnston after their young son, Luke, was diagnosed with Bardet-Biedl Syndrome (BBS), a rare genetic condition that leads to progressive vision loss and affects multiple body systems. From the beginning, our goal has been to bring hope to families impacted by BBS by: Raising awareness of this rare disease. Funding research toward treatments and potential cures. Providing support and resources for the BBS community. We are a registered 501(c)(3) nonprofit organization (EIN: 92-2174042) with our virtual headquarters in Arizona (we don't have an office building!). Every fundraiser we run — whether it’s an adventure vehicle giveaway, a dream vacation, or another exciting prize — directly supports this mission. Since our founding, our community has helped us grant over $3 million dollars to support rare disease research and awareness. Each dollar helps us bring the BBS community closer to life-changing treatments. We invite you to learn more about us here: About Our Mission . Read more in this se