Retinitis pigmentosa (RP) is a group of rare genetic disorders that cause breakdown and loss of cells in the retina, leading to progressive vision loss. Bardet-Biedl Syndrome (BBS) is one of many genetic conditions that can cause RP/blindness in young children. According to recent data from the Alliance for Vision Research, vision research is currently at a pivotal moment where private funding remains the main driver for much of this innovation. This guide outlines exactly how you can support sight-saving research and help advance therapies for pediatric inherited retinal diseases.
Direct Support and Donations
The most immediate way to impact clinical trials is through direct financial contributions. Non-profit organizations like A Race Against Blindness operate with a lean structure to minimize expenses and maximize the impact of every dollar donated. Our current target is supporting a therapy for retinitis pigmentosa due to BBS-1. A similar gene therapy, Luxturna, is FDA approved to treat retinitis pigmentosa due to Leber congenital amaurosis. This therapy uses a similar mechanism to restore vision.
When you donate, you are funding the best in retinitis pigmentosa research. These funds go directly toward supporting sight-saving clinical trials. We have set up our non-profit to minimize expenses and support sight saving research through philanthropy. Your support is vital to saving children’s vision. By contributing to our mission, you help ensure that therapies reach children who are actively going blind.
For more information on our financial transparency and annual reports, please visit our About Us page. You can also view our Charity Navigator profile to verify our 501(c)(3) exempt status and operational efficiency.
Participate in Fundraisers
Fundraising is a powerful way to engage your community while raising critical capital for research. We currently host several high-value giveaways that allow participants to win incredible prizes while supporting our mission. These fundraisers are designed to be accessible and exciting for everyone.
Our current active fundraisers include:
- Volkswagen ID. Buzz EV: Enter for a chance to win our first-ever EV, the Volkswagen ID. Buzz 1st Edition 4MOTION, plus $20,000 cash. This fundraiser ends on July 26, 2026.
- America's 250th: Celebrate America's 250th with over $250,000 in prizes, including a Ford F-150 Raptor, Ford Explorer ST, cash prizes, and 250 total winners. This ends on August 2, 2026.
- Mini Class A Thor + Bronco: Win an incredible adventure package including a Thor Axis motorhome, a Bronco Badlands Sasquatch, and $50,000 cash. This ends on August 30, 2026.
These events not only raise funds but also spread awareness about the urgency of finding a cure for Bardet-Biedl Syndrome. You can view all past winners and check your entries through our Donor Portal. Each entry helps us move closer to a world where no child has to face the darkness of blindness.
Access the IRD Education Hub
Understanding the science behind inherited retinal diseases (IRDs) is crucial for effective advocacy. The medical research involved in vision saving treatment and restorative therapy is advancing rapidly. However, public understanding often lags behind scientific breakthroughs. We have created a comprehensive IRD Education Hub to bridge this gap.
Retinitis pigmentosa (RP) can be caused by many conditions. Luke’s cause of progressive vision loss is caused by Bardet-Biedl Syndrome (BBS), which affects multiple organ systems, including the eyes. There is a slow, progressive loss of vision until many BBS patients become blind in their teenage years. Our education resources explain these mechanisms in clear, accessible language.
Visit our IRD Education Hub to learn about clinical trials, condition databases, and resources for newly diagnosed families. This hub serves as a central repository for verified information, helping families navigate the complex landscape of genetic eye diseases. By educating yourself and others, you become a more effective advocate for research funding.
Advocacy and Policy Support
Advocacy is a critical component of supporting sight-saving research. Vision research is at a pivotal moment. With the NEI facing potential consolidation and proposed NIH funding caps threatening scientific progress, staying informed and engaged has never been more critical. Preserving the NEI as an independent institute ensures that research continues to receive the necessary attention and resources.
You can take action by advocating with Congress, signing on to advocacy efforts, sharing resources, serving as an ambassador, or supporting our work. Your involvement helps protect and advance sight-saving research. The Alliance for Vision Research provides tools and guidelines for effective advocacy. Visit their Take Action page to learn how you can contact legislators and support policy changes that benefit vision research.
Additionally, the IRIS Registry Data Analysis by the American Academy of Ophthalmology highlights the importance of big-data analytics in preventing blindness. Applicants for research grants must have relevant analytics experience and align with the Academy’s mission to protect sight. By supporting organizations that prioritize data-driven research, you help ensure that future therapies are based on robust clinical evidence.
Support Options Comparison
Choosing the right way to support sight-saving research depends on your personal capacity and interests. Below is a comparison of the primary support methods available through our organization.
| Support Method | Impact Level | Time Commitment | Best For |
|---|---|---|---|
| Direct Donation | High Immediate Impact | Minimal | Those who want to contribute funds directly to clinical trials. |
| Fundraiser Entry | High Awareness | Low | Individuals who enjoy giveaways and want to spread the word. |
| Education Hub | Medium Long-term | Variable | Families and advocates seeking detailed medical information. |
| Advocacy | Systemic Change | High | Policy advocates and long-term supporters of research funding. |
Key Takeaways
- Urgency: Luke is 10 years old and actively going blind. Without intervention, he will lose his vision in his teenage years.
- Focus: Our current target is supporting a therapy for retinitis pigmentosa due to BBS-1, a rare but devastating cause of childhood blindness.
- Transparency: We are exempt under Section 501(c)(3) with EIN 92-2174042, ensuring your donations are tax-deductible and used efficiently.
- Community: Our mission is to end childhood blindness caused by rare genetic conditions through pioneering research and innovative treatments.
- Advocacy: Preserving the NEI as an independent institute is critical for the future of vision research funding.
- Education: The IRD Education Hub provides comprehensive resources for newly diagnosed families and researchers.
- Impact: Private funding remains the main driver for much of the innovation in sight-saving treatments.
Frequently Asked Questions
What is Retinitis Pigmentosa?
Retinitis pigmentosa (RP) is a group of rare genetic disorders that cause the breakdown and loss of cells in the retina, leading to progressive vision loss.
What is Bardet-Biedl Syndrome?
Bardet-Biedl Syndrome (BBS) is one of many genetic conditions that can cause RP/blindness in young children. It affects multiple organ systems, including the eyes, kidneys, and endocrine system.
How does A Race Against Blindness use donations?
We have set up our non-profit to minimize expenses and support sight saving research through philanthropy. Funds go directly toward supporting sight-saving clinical trials for BBS-1.
Can I participate in fundraisers if I live outside the US?
Our fundraisers are primarily designed for US residents due to shipping and legal regulations. Please check the specific terms of each fundraiser for eligibility details.
What is the IRD Education Hub?
The IRD Education Hub is a comprehensive resource center providing information on inherited retinal diseases, clinical trials, and resources for newly diagnosed families.
How can I advocate for vision research funding?
You can advocate by contacting your legislators, signing petitions, and supporting organizations like the Alliance for Vision Research that work to preserve independent funding for the NEI.
Is A Race Against Blindness a registered non-profit?
Yes, we are exempt under Section 501(c)(3) with EIN 92-2174042. Your donations are tax-deductible to the fullest extent of the law.
Take Action Today
There is hope for childhood blindness. We were told there was nothing we could do about it. Now, we have every reason to hope, if we stand together. You can make an impact on saving childhood eyesight by entering our giveaway fundraisers or making a direct donation. Visit our home page to get started. Together, we can beat childhood blindness.