GILBERT, Ariz., Jan. 06, 2026 (GLOBE NEWSWIRE) -- A Race Against Blindness, the Arizona-based 501(c)(3) nonprofit founded by Dr. Stephen Johnston and Kristina Johnston, today announced $1.1 million in new grant funding to Axovia Therapeutics, closing a critical funding gap needed for the launch of the AXV-101 clinical trial, an investigational therapy aimed at treating vision loss associated with Bardet-Biedl Syndrome 1 (BBS1). This latest funding brings A Race Against Blindness’s total commitment for AXV-101 to $5.1 million.
The AXV-101 clinical trial received Clinical Trial Application (CTA) clearance during the third quarter of 2025. Despite this regulatory milestone, the trial could not move forward due to a remaining funding gap. The newly announced $1.1 million grant closes that gap, providing the vital funds needed to initiate the trial, which is now expected to begin in early 2026.
“This funding is a crucial milestone in bringing this investigational therapy into the clinic in the coming months,” said Prof. Phil Beales, Chief Executive Officer and Co-Founder of Axovia Therapeutics. “Our planned clinical trial is a first-in-human open-label dose-escalation trial, and as such, we’re moving forward with both urgency and care. We know how much uncertainty families face when they hear this diagnosis. Our goal is simple but powerful: to carefully explore whether this gene therapy can stop retinal degeneration, and, in time, change what it means to live with BBS1-related vision loss.”
A Race Against Blindness has played a central role in funding the advancement of AXV-101 from preclinical development through Clinical Trial Application (CTA) clearance, exemplifying its mission-driven approach to accelerating therapies for rare pediatric eye diseases.
“This commitment reflects our belief that promising therapies should not stall at the threshold of human trials due to lack of funding,” said Stephen Johnston, MD, MBA, Co-Founder of A Race Against Blindness. “This has been a deeply personal mission over the last 3 years, and to now be at this milestone leaves me full of gratitude and hope. The generosity of our supporters is both humbling and a beacon of light for what can be accomplished when people come together around a cause.”
About A Race Against Blindness
A Race Against Blindness is a family-run nonprofit founded by Stephen and Kristina Johnston after learning that their son has Retinitis Pigmentosa caused by Bardet-Biedl Syndrome, a rare condition leading to progressive vision loss in children. Their family has transformed a personal diagnosis into a mission to accelerate treatments for blinding diseases. Established to address the critical gap that often prevents promising vision therapies from reaching patients, A Race Against Blindness provides targeted, milestone-driven funding to move high-impact programs from the laboratory into human clinical trials.
Contact:
Dr. Stephen Johnston
Co-Founder & President
A Race Against Blindness
Email: press@araceagainstblindness.org
This official announcement distributed via GlobeNewswire— you can read the full press release here, and has since been picked up by Yahoo Finance, FirstWord Pharma, and BioSpace, highlighting the growing attention this research is receiving.
🧡 A Personal Thank You to Our Donors 🧡
We also want to personally thank the donors who made this milestone possible. Steve recorded a short, heartfelt message to share our family’s gratitude and reflect on what this moment means to us.
👉 You can watch the thank-you message on our Instagram here.
From our family to yours—thank you for believing in this mission and helping move hope forward.
— Kristina, Steve, and the entire team at A Race Against Blindness
18 comments
Peace, love, and prayers to everyone.
Hallelujah! Thank you for hope!
Wonderful news & accomplishment! Great results will come because of your hard work & dedication to finding treatment for this disease.
Thank you!
This is tremendous news! Filled with so much hope. May it give you all strength to keep moving forward in a powerful way! Be encouraged. Much prayers and all the love.