A Family’s Race To Treat Childhood Blindness: A Race Against Blindness Grants $1 Million to Bardet-Biedl Syndrome Research

A Family’s Race To Treat Childhood Blindness: A Race Against Blindness Grants $1 Million to Bardet-Biedl Syndrome Research An Arizona Family’s Inspirational Journey Highlighted as Donors Across America Come Together to Fund the Advancement of Potential Life-Changing Therapeutic, Offering Hope to the BBS Community and Families Phoenix, AZ – October 30, 2024 — A Race Against Blindness, an Arizona-based nonprofit founded by Dr. Stephen Johnston and Kristina Johnston, is proud to announce a $1 million grant to support groundbreaking research in Bardet-Biedl Syndrome 1 (BBS1). This rare genetic disease leads to childhood blindness and other severe health complications. A Race Against Blindness’s mission is deeply personal for the Johnston family. After their son, Luke, was diagnosed with BBS, they refused to stand by and watch as his sight faded. “We knew we had to do something—not just for Luke, but for every family facing a rare disease diagnosis,” said Co-founder and President Stephen Johnston, M.D. Determined to make a difference, the Johnston family founded A Race Against Blindness.