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:
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Raising awareness of this rare disease.
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Funding research toward treatments and potential cures.
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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.
