A Race Against Blindness

BBS Research Questionnaire


We are A Race Against Blindness, a nonprofit organization founded by a family affected by Bardet-Biedl Syndrome (BBS). Our mission is to advance research related to BBS in hopes of bringing new therapies and treatment options to the BBS community. We are actively working with leading BBS researchers and clinicians to bring new therapies to human clinical trials. While our name implies that we only focus on vision loss, after founding our nonprofit, we quickly learned that there is outstanding work being done with regard to other aspects of BBS, including hyperphagia (insatiable appetite with over-eating that leads to obesity).

As part of our preparatory efforts, we are conducting a preliminary survey of the BBS community to learn about general interest in participating in any human clinical trials that may become available in the future. Your survey participation is entirely voluntary, and individual responses will be kept confidential, but your participation will certainly be beneficial in helping us advance the efforts of making these new therapies a reality.

Thank you in advance for your time. We truly appreciate it, and we are grateful to serve the BBS community as a nonprofit organization.

All our best,
Stephen and Kristina Johnston
Co-Founders, A Race Against Blindness