When people search “is A Race Against Blindness legit?” they’re often trying to understand one thing: why we do this, and whether it’s real.
For us, the answer is simple—and deeply personal.
A Race Against Blindness exists because our son is losing his vision.
He has Bardet-Biedl Syndrome (BBS), a rare genetic condition that causes progressive retinal degeneration. Like many children with BBS-related retinitis pigmentosa, he is losing photoreceptor cells every single day. There is no pause button. There is no waiting until the timing feels convenient.
This isn’t an abstract cause for our family. It’s our daily reality.
This Isn’t a “Side Passion” — It’s Our Life
A Race Against Blindness wasn’t created as a fundraising idea first. It was created out of urgency.
When you learn that your child will likely go blind as a teenager, the question becomes painfully clear: How fast can we move?
Not someday. Not eventually. Now.
Gene therapy and emerging treatments can only help if there is still vision left to preserve. Once those cells are gone, they’re gone. That reality shapes every decision we make—especially the pace at which we fundraise.
Why Urgency Sometimes Looks “Different”
We understand that seeing multiple fundraisers can raise questions. That’s fair.
But from our perspective, time is the one thing we don’t have.
We are racing to:
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Fund research while vision remains
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Support clinical trial readiness
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Push promising therapies forward before it’s too late for children like our son
Running frequent, independent fundraisers allows us to keep momentum moving forward instead of stopping and restarting. Each fundraiser stands alone, with its own rules, timelines, and oversight—but they all point toward the same goal: saving sight before it’s lost.
Built by Parents, Guided by Experience
This organization is run by parents who are living this diagnosis every day, alongside a leadership team with deep medical, scientific, and business experience. We are not enriching ourselves. We are not passive observers.
We are parents doing everything in our power to change the future for our child—and for families who don’t yet know they’ll need this fight.
So, Is A Race Against Blindness Legit?
Yes. And more than that—it’s personal.
Every fundraiser, every late night, every difficult conversation exists because this disease does not wait. Our urgency reflects that reality.
We know trust matters. We know transparency matters. And we will always be honest about why we move quickly: because children are losing vision right now.
Still have questions?
This article is part of our ongoing series answering one of the most common questions we see online:
“Is A Race Against Blindness legit?”
Each article explores a different aspect of our organization — from transparency and compliance to community experiences and independent verification.
👉 Read the full series here:
Trust, Transparency, and Our Mission: Is A Race Against Blindness Legit?
