PHOENIX, Oct. 30, 2024 (GLOBE NEWSWIRE) — 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. Through creative fundraising efforts, including sweepstakes offering dream cars, adventure vans, and even Taylor Swift concert tickets, the Johnstons have inspired thousands nationwide to help save the eyesight of children affected by RP/BBS.
The $1 million funding from A Race Against Blindness will go to Axovia Therapeutics to support a clinical trial for AXV-101, a gene therapy aimed at preventing blindness and addressing obesity in children with BBS. The trial is scheduled to begin in the United Kingdom in mid-2025, with future plans to initiate a clinical trial in the United States and to progress the program to also treat obesity.
“This $1 million in funding proves what can be achieved when family and community unify around a singular cause for change. The support for this clinical trial is a symbolic milestone for the community affected by both vision loss and rare diseases,” said Dr. Stephen Johnston.
BBS is a rare genetic disorder affecting approximately one in 70,000 – 100,000 children in Europe and North America. For families dealing with this condition, the loss of vision, commonly presenting as retinitis pigmentosa (RP), and accompanying health challenges can be devastating. However, this story is about hope and action for the Johnston family and their generous supporters.
“We began this journey to help our son, but it has grown into something far bigger,” said Dr. Johnston. “Every dollar raised reflects hope. Our family will keep pushing, fundraising, and believing we can save the eyesight of children affected by RP/BBS, and eventually make even bigger impacts for the rare disease community as a whole. This journey continues.”
For more information about A Race Against Blindness, media interviews, and upcoming sweepstakes information, visit www.ARaceAgainstBlindness.org.
Media Contact
Stephen Johnston, M.D., Co-founder and President
[email protected]
(520) 548 – 1807
About Us
We founded a Race Against Blindness after receiving the life-altering news that our son, Luke, has Bardet-Biedl Syndrome (BBS). This rare genetic condition is slowly taking away his vision. This diagnosis ignited our mission to fight not only for Luke but for every child facing blindness due to rare genetic disorders like BBS.
BBS is one of many genetic conditions that can cause retinal degeneration and blindness in young children. As we watched Luke, a sweet and gentle 11-year-old, face the reality of losing his sight by his teens, we knew we had to act.
We are determined to ensure that children like him can continue to enjoy the activities they love—riding bikes, playing with Pokémon cards, competing in karate, or building Legos—without the looming threat of blindness.
Since Luke’s diagnosis, we have become deeply connected to the rare disease community.
While the FDA recognizes more than 7,000 rare diseases, many receive little attention or funding for research, leaving families like ours with few options. That’s why we established A Race Against Blindness—to change that narrative. Our nonprofit is committed to supporting sight-saving research, with every dollar raised directly funding the search for therapies and cures.
We are a family run nonprofit with no executive salaries, and we focus on making a real difference. We channel philanthropy into groundbreaking treatments for conditions like BBS and retinal degeneration. We are racing to save sight and bring hope to children and families.
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A video accompanying this announcement is available at: https://www.globenewswire.com/NewsRoom/AttachmentNg/851b3cc6-1a3c-4ad6-9674-29d97bb280c0
A photo accompanying this announcement is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/25e26c99-7b67-4477-b0f1-b5c16cbcb3d0