Retinitis pigmentosa (RP) is a group of rare genetic disorders that affect the eye's ability to respond to light, leading to progressive vision loss. Bardet-Biedl Syndrome (BBS) is one of many genetic conditions that can cause RP in young children. Our son, Luke, has been diagnosed with BBS1 and is actively going blind. And thus, the birth of A Race Against Blindness, an organization dedicated to finding a cure for BBS/RP. Private funding remains the main driver for much of this innovation. Your support is vital to saving children’s vision. (About Retinitis Pigmentosa Causes)

Understand the Cause

Before contributing, it is essential to understand the medical landscape. 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. (Your Shopping Cart)

When someone has retinitis pigmentosa, the light sensitive layer in the back of the eye (the retina) begins to degenerate, resulting in slow vision loss. Unlike other more common causes of vision loss, such as refractive issues in the lens (the front of the eye), retinal diseases such as RP cannot be corrected by glasses. This distinction highlights why research into genetic therapies is critical. (IRD Education Hub A)

According to recent data from the National Eye Institute, 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 critical funding continues to flow into sight-saving science.

Enter Fundraisers

One of the most effective ways to support sight-saving research is through our active giveaway fundraisers. These events allow you to potentially win incredible prizes while directly funding clinical trials. We have set up our non-profit to minimize expenses and support sight saving research through philanthropy.

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 gene therapy model that we are working to replicate for BBS patients.

Current Active Fundraisers

By entering these fundraisers, you are not just buying a ticket; you are funding the best in retinitis pigmentosa research. Every entry contributes to the goal of advancing therapies for pediatric inherited retinal diseases.

Make Direct Donations

While fundraisers offer a chance to win, direct donations provide immediate, unrestricted support for our mission. The medical research involved in vision saving treatment and restorative therapy is advancing rapidly. This is excellent news! However, funding is significantly limited. Private funding, such as the money we raise, remains the main driver for much of this innovation.

We were told there was nothing we could do about it. Now, we have every reason to hope, if we stand together. Your donation helps us reach families who have been diagnosed with Bardet-Biedl Syndrome (BBS) and other rare genetic conditions. We are exempt under Section 501(c)(3), and your contributions are tax-deductible.

According to Charity Navigator, A Race Against Blindness' foremost strategic goal is to fund a groundbreaking vision-saving therapy. No other organization is currently funding this critical therapy and clinical trial. Your direct support ensures that we remain the sole driver of this specific, life-changing research.

Advocate for Vision Research

Supporting sight-saving research extends beyond financial contributions. Advocacy plays a crucial role in protecting the future of vision science. Whether 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 emphasizes that staying informed and engaged is critical. By sharing our story and the importance of genetic research, you help build the public awareness necessary to sustain funding for rare diseases. Luke’s story of seeing the world before losing more vision was featured on GMA, helping propel our mission to the national level.

Educate Yourself and Others

Knowledge is power. Understanding the nuances of inherited retinal diseases (IRDs) allows you to be a more effective advocate. We have created a Comprehensive IRD Education Hub to help families and supporters understand the science behind these conditions.

Resources for Newly Diagnosed families are available to help navigate the emotional and medical journey. Additionally, our Condition Database provides detailed information on various genetic causes of blindness. By educating yourself, you can better explain the urgency of our mission to friends, family, and community groups.

According to Prevent Blindness, the data from the ‘Prevalence of Glaucoma in the U.S. in 2022’ study demonstrates that now, more than ever, is the time to dedicate resources to help the growing number of glaucoma patients obtain access to eye care to help save vision from the ‘Silent Thief of Sight.’ While this statistic focuses on glaucoma, the principle applies to all vision-threatening conditions. Early intervention and research are key to preserving sight.

Key Takeaways

• Private Funding is Critical: Private funding, such as the money we raise, remains the main driver for much of this innovation in rare genetic disease research.
• Unique Mission: A Race Against Blindness is the only organization currently funding the specific gene therapy for BBS-1 related RP.
• Active Fundraisers: Enter our current fundraisers, including the Volkswagen ID. Buzz EV and the Mini Class A Thor + Bronco package, to support our mission.
• Advocacy Matters: Supporting the National Eye Institute and advocating with Congress helps protect future vision research funding.
• Direct Impact: Donations are tax-deductible and go directly to minimizing expenses while maximizing research support.
• Educational Resources: Utilize our IRD Education Hub and Condition Database to understand the science behind Bardet-Biedl Syndrome.
• Community Support: Join our RP/BBS Community Survey to help shape future research directions and support networks.

Frequently Asked Questions

What is Bardet-Biedl Syndrome (BBS)?

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, and leads to progressive vision loss.

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. Our current target is supporting a therapy for retinitis pigmentosa due to BBS-1.

Are donations tax-deductible?

Yes, A Race Against Blindness is exempt under Section 501(c)(3). Your contributions are tax-deductible to the fullest extent of the law.

What is Retinitis Pigmentosa?

Retinitis pigmentosa (RP) is a group of rare genetic disorders that affect the eye's ability to respond to light, leading to progressive vision loss. It cannot be corrected by glasses.

How can I stay updated on clinical trials?

You can subscribe to our newsletter and check the Donor Portal for updates on clinical trial progress and fundraiser results.

What is the goal of the organization?

Our goal is to advance therapies for pediatric inherited retinal diseases. We are dedicated to finding a cure for BBS/RP.

How do I access the IRD Education Hub?

You can access the Comprehensive IRD Education Hub through our main menu under the 'Learn about Blindness' section.

Take Action Today

There is hope for childhood blindness. We were told there was no cure. Now we're funding clinical trials. You can make an impact on saving childhood eyesight by entering our giveaway fundraisers or making a direct donation. Visit our main home page to learn more about our mission and how you can help. Together, we can beat childhood blindness.