Fighting for Vision: Funding Sight-Saving Clinical Trials to Treat Childhood Blindness.

Imagine waking up to find your world fading—colors dulling, details blurring, and the faces of loved ones becoming unrecognizable. For many who face preventable and inherited blindness, this distressing scenario is a harsh reality. However, hope is on the horizon, fueled by organizations like A Race Against Blindness , dedicated to restoring sight and transforming lives.

The Mission Behind A Race Against Blindness

"Your son is going blind." This heart-wrenching diagnosis is one that many parents dread to hear. Steven and Kristina Johnston were told there was nothing they could do about it when they learned of their son Luke’s rare genetic condition leading to gradual vision loss. As parents, they were consumed by a profound sense of helplessness and despair. Yet, amidst the pain, a spark of determination emerged—the feeling that they needed to act. This pivotal moment led them to form their non-profit: A Race Against Blindness.

Undeterred by the odds against them, the Johnstons set out to find a cure. They made it their mission to connect with researchers and experts in the field, asking crucial questions: Is anyone working on this? Is anybody making headway on the problem of retinitis pigmentosa caused by Bardet-Biedl syndrome? Their efforts soon led them to connect with leading researchers and clinicians in both the United States and the United Kingdom who are conducting groundbreaking research for BBS and retinitis pigmentosa.

Their mission is now firmly rooted in advocating for communities affected by these conditions. They actively fundraise to promote research into therapies for pediatric inherited retinal diseases like RP/BBS1—a rare yet devastating cause of childhood blindness. This innovative gene therapy represents a beacon of hope for families grappling with the potential for vision loss.

Luke, at just ten years old, embodies resilience and empathy beyond his years. Despite facing significant physical and emotional challenges through multiple hospitalizations and surgeries, he showcases an exceptional level of kindness and compassion. This profound connection to the world around him not only sets him apart but also inspires his parents to fight relentlessly for a brighter future—not just for Luke, but for all children facing similar struggles.

Restoring Vision, Restoring Hope

In particular, advancements in gene therapy could revolutionize the treatment of pediatric blindness. The clinical trials funded by A Race Against Blindness could potentially offer cures for RP/BBS1, paving the way for a brighter future for children who would otherwise face a life of deteriorating vision.

The Motivation Behind the Movement

The founding of A Race Against Blindness emerged from the Johnstons' deeply personal journey. Luke's diagnosis quickly tethered them to the broader rare-diseases community, highlighting a pressing issue: although over 7,000 rare diseases are classified by the FDA, each condition typically impacts a limited number of individuals, often leading to a lack of funding and research into potential treatments.

Their mission extends beyond Luke’s condition, aiming to fill an essential gap in awareness and resources available for rare diseases that result in blindness. By shining a spotlight on these conditions, Steven and Christina hope to garner the necessary attention and funding for meaningful research and treatment avenues.

How the Race Helps

To support its mission, A Race Against Blindness organizes annual fundraising events, including amazing giveaways. These fundraisers only raise crucial funds for surgeries and clinical trials but also elevate awareness of preventable blindness and the need for accessible eye care and innovative treatments.

Participating in these fundraisers allows you to make a tangible difference, while also entering to win some pretty incredible prizes. Every step taken and every dollar donated translates into someone getting closer to regaining their sight—whether through groundbreaking surgeries or state-of-the-art gene therapy.

Join the Race

While the journey toward eradicating preventable and inherited blindness may be long, the strides taken by A Race Against Blindness are monumental. With each donation the organization brings people closer to a future where vision loss no longer stands as a barrier to living a fulfilling life.

You too can be part of this vital mission. Join A Race Against Blindness by participating in their latest fundraisers or helping spread the word about their essential work. Together, we can run toward a future where everyone—especially children like Luke—can experience the world through clear eyes.

Entering these fundraisers could provide you the opportunity to not only make an impact but also win amazing prizes like the ones listed below.

An Overland Tundra TRD PRO + Overland Trailer + $60k cash – Enter by August 18 ^th!!!

• 2024 Toyota Tundra TRD PRO with custom overland build and roof top tent, sleeps 2
• Backroads Overland Co Trailer with kitchen, heated shower, solar, and queen bed, sleeps 2-3
• This ultimate family overland giveaway also comes with $60,000 cash.
• TIME IS RUNNING OUT: One of YOU will be getting the keys, title, and cash SOON!

Dream Build Adventure Van

• WE built out the exterior with $40k of accessories.
• YOU get to custom design and build the interior with our sponsor Rossmönster Vans, suited to YOUR #VanLife needs.
• We also include $50k cash.

GMC Sierra 2500 AT4xHD + CanAM Maverick

• GMC Sierra 2500HD with the AT4X package, Duramax diesel, 5th wheel prep, lift and off-road tires.
• CanAM Maverick XRS TurboRR 4-seat SXS with a 900 cc engine.
• $10,000 upgrade budget at Doetsch off-road, plus $50,000 cash.

For more information on how to support their cause or participate in fundraisers, visit their website: araceagainstblindness.org.

Check out past fundraisers and winners HERE

Make a direct donation HERE

In conclusion, supporting organizations like A Race Against Blindness is not just about contributing to a cause—it's about standing with families like the Johnstons as they fight for a future where no one has to face the darkness of preventable blindness. At Tern Overland, we believe in the power of community and the importance of rallying behind those who are working tirelessly to bring light into the lives of others. We are honored to share the story of A Race Against Blindness and encourage everyone in our community to get involved, whether by participating in their fundraisers or simply spreading the word. 

Thank you for taking the time to read about this incredible mission. Together, we can make a real difference—one step, one donation, and one shared story at a time.