Non-profit funding sight-saving research for children
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Follow A Race Against Blindness research funding, inherited retinal disease developments, community stories, grant announcements, and updates from families racing toward sight-saving treatments.
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University College London named Dr. Victor Hernandez, co-founder of Axovia Therapeutics, to its 200 Faces. In thanking the people behind his gene therapy for Bardet-Biedl syndrome, he singled out A Race Against Blindness.
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Every dollar below has been paid out to research, made possible by the generosity of our sponsors and donors. Real people making an impact on saving children's eyesight.
total research funding, fully paid out · as of October 2026
$3M awarded
To fund the preclinical development and regulatory preparation of AXV-101, a gene therapy for Bardet-Biedl Syndrome type 1 (BBS1), advancing the program toward its first human clinical trial.
$1M awarded
To support clinical development of the first-in-human trial, including trial preparation and regulatory progress following clinical trial clearance.
$2.1M awarded
To close the remaining funding gap required to launch the AXV-101 clinical trial, enabling the study to begin in early 2026; and, through a grant to the Foundation Fighting Blindness, to fund early-stage gene therapy research with Dr. Thomas Mendel and gene-agnostic therapy (NACA) aimed at slowing vision loss in RP. A matched donor brought in an additional $775,000, bringing the total impact of that grant round to $1.55M.
Bardet-Biedl Syndrome (BBS) manifests through a combination of symptoms, which can vary in severity among affected individuals. Common symptoms include vision problems (retinal degeneration leading to blindness), obesity, polydactyly (extra fingers or toes), kidney abnormalities, intellectual disabilities, and reproductive issues.
Read moreBardet-Biedl Syndrome (BBS) is a rare genetic disorder that affects multiple body systems, causing vision problems, obesity, kidney issues, extra fingers or toes, and intellectual disabilities. It is inherited in an autosomal recessive pattern and affects about 1 in 100,000 to 160,000 people worldwide. Diagnosis involves clinical evaluation and genetic testing. Current research focuses on understanding its genetic causes, studying cilia function, and developing treatments to manage its symptoms.
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