Free platform empowers patients and families with information on 53 diseases, 125 genes, active clinical trials, treatment pipelines, and support resources
GILBERT, Ariz., July 08, 2026 (GLOBE NEWSWIRE) -- Today, as co-founder Steve Johnston celebrates his birthday, A Race Against Blindness marks another milestone: helping families facing inherited blindness. The Arizona-based nonprofit, founded by Steve and Kristina Johnston after their son Luke's diagnosis, today launched one of the nation's most comprehensive educational resources for individuals and families affected by inherited retinal diseases (IRDs).
The new platform, available free of charge, reflects A Race Against Blindness’s commitment to raising awareness, convening the vision community, and empowering patients with knowledge. To explore the Education Hub and resources on inherited retinal disease, visit https://education.araceagainstblindness.org/.
"When Luke was diagnosed, we found ourselves overwhelmed, frightened, and searching everywhere for answers,” said Steve Johnston, co-founder of A Race Against Blindness. "Families facing inherited retinal diseases deserve access to clear, trustworthy, and up-to-date information. We built this resource because knowledge is empowering. No family should have to navigate these diseases alone.”
The online resource center features:
- Detailed profiles on 53 inherited retinal diseases, including prevalence, age of onset, symptoms, associated genes, available treatments, and active clinical trials.
- Information on 125 genes associated with inherited retinal diseases, helping families better understand the genetic basis of their condition.
- A continuously updated treatment pipeline tracking therapies in development, from early clinical studies to FDA-approved treatments, with data sourced from ClinicalTrials.gov and the Foundation Fighting Blindness.
- An extensive Education Hub covering topics ranging from basic eye anatomy and genetics to cutting-edge therapies, adaptive technologies, daily living strategies, and finding medical specialists.
- Community resources including links to assistive technologies, state-by-state services, and support resources for children and families.
About A Race Against Blindness
A Race Against Blindness is a rapidly growing national nonprofit that raises awareness and funding for childhood blindness research.
This family-driven charity has gained national visibility through its highly engaged digital community, which now includes over 500,000 followers across Instagram, Facebook, TikTok, and YouTube.
The charity is also honored to maintain more than 6,000 independent Trustpilot reviews with an "excellent” 4.9-star rating, reflecting the trust and enthusiasm of its growing community of supporters. They are honored to have earned the prestigious Candid Platinum Seal of Transparency, the highest level of recognition for nonprofit accountability and transparency.
A Race Against Blindness plans to continue expanding partnerships with researchers, nonprofits, businesses, and supporters nationwide as it works toward its mission of funding treatments and cures for inherited retinal diseases.
To learn more about A Race Against Blindness, visit: www.araceagainstblindness.org.
Media Contact:
Dr. Steve Johnston
A Race Against Blindness
