Our Story
Mantle cell lymphoma changes your world overnight.
When you or someone you love is diagnosed, you start searching—for answers, for hope, for a path forward. What you often find instead is outdated information, scattered resources, and a flood of uncertainty.
Our story began with a simple question.
On a call with Dr. Tycel Phillips, a leading expert in mantle cell lymphoma, patients and caregivers gathered to learn about what comes after CAR-T therapy—a moment filled with both hope and hard questions. For one of our founders (my sister Kris), this wasn’t theoretical. It was personal.
At the end of the discussion, someone asked: “What can we, as patients, do to help?”
Dr. Phillips’ answer was clear: Mantle cell lymphoma is a rare disease—and it lacks a dedicated advocacy organization. One could make a real difference.
That moment stayed with us.
After the call, we reached out to Larry, the organizer of the call (and founding member), and said, “Let’s do this. Let’s start something.” At the very same time, across the ocean in London, another future founder was coming to the same conclusion. Living with mantle cell lymphoma as a young father, Seb had attended ASH—the world’s largest hematology conference—and left with a striking impression: despite promising science, mantle cell lymphoma still felt like an orphan.
He wanted more. More focus. More urgency. Ultimately, a cure.
Through a shared network we found each other. What began as separate realizations quickly became a collective commitment and was soon joined by new, passionate members.
Mantle Cell Lymphoma Alliance was born.
Why Now
The need has never been clearer.
While larger blood cancer organizations have transformed patient support and advanced research across many diseases, mantle cell lymphoma has not received the level of focused attention or funding it requires. Important efforts—like the Lymphoma Research Foundation’s mantle cell lymphoma symposium—continue to play a critical role in advancing science. But there remains a gap.
At the same time, patients are navigating a complex and rapidly evolving landscape largely on their own. In online communities, we saw the same questions again and again—confusion about treatment options, uncertainty about what information to trust, and fear fueled by outdated search results.
No one place to turn. No single, trusted path forward.
What We’re Building
Mantle Cell Lymphoma Alliance exists to change that.
We are building a focused, patient-centered organization dedicated to:
- Providing clear, expert-vetted information patients can trust
- Connecting patients, caregivers, clinicians, and researchers
- Advancing research through targeted funding and collaboration
From the beginning, this has been a community shaped by those closest to the disease. Our board includes patients and family members, alongside leaders committed to building something that is both rigorous and deeply human. As we’ve grown, other dedicated patients have stepped forward to help shape this work—ensuring that lived experience remains at the center of everything we do.
We are also honored that Dr. Tycel Phillips, whose insight helped spark this effort, will serve on our Scientific Advisory Board—helping guide our work with the clinical and scientific expertise this moment demands.
Because no one understands the urgency of this disease better than those living with it.
Looking Ahead
Mantle cell lymphoma is increasingly treatable. Remissions are lasting longer. Breakthroughs are happening.
But this is still, for many, a chronic disease. And for too many, a life-limiting one.
We believe that with sustained focus, smarter collaboration, and meaningful investment, we can accelerate progress—toward better treatments, longer remissions, and ultimately, a cure.
Now that we are officially recognized as a 501(c)(3), we are ready to do that work.
We hope you’ll join us.
Karen Holden - MCLA co-founder and Board Secretary