Meet Kirk Lord: The Youth Voice Changing the Future of PANS/PANDAS Advocacy
When you talk to Kirk Lord, there’s a certain energy you feel right away—a mix of purpose, humility, and fire. At just 20 years old, he has become one of the leading voices for youth-led PANS/PANDAS advocacy in the United States. But if you ask him how he got here, he’ll tell you it started long before the press interviews, the D.C. meetings, or the launch of a national nonprofit.
It began with a teenager who wanted to reach his potential—on the track, in the classroom, and in life.
A Moment of Clarity That Sparked a Movement
Kirk grew up driven: first by athletics, then by personal growth, and ultimately by a desire to make a meaningful mark on the world. But on December 31, 2022, everything shifted.
He realized that the most powerful impact he could make wasn’t theoretical, it was deeply personal. His story, his survival, and his voice could change lives.
“I realized that if I was going to leave my mark on the world, it would be through PANS/PANDAS advocacy given the uniqueness and inspirational qualities of my story,” he shared. “So I made the New Year’s resolution to get involved.”
Within months, Kirk was communicating with Senator Ron Wyden’s office and appearing on Fox/NBC to advocate for a federal insurance mandate for PANS/PANDAS treatment. But the turning point came in October 2024, during a conversation with California advocates April Ronay and Karla Aceves. They told him the movement needed youth voices—young survivors telling their stories, shaping strategy, leading with lived experience.
And Kirk’s immediate response?
Why don’t I build a national youth movement to do exactly that?
Three weeks later, he founded the National PANDAS/PANS Youth Alliance (NPYA), now a thriving nonprofit that officially reached its one-year anniversary on November 11, 2025.
Building NPYA: “Community Over Business”
In NPYA’s first year, Kirk learned a lesson many leaders take decades to understand:
Productivity matters.
But community matters more.
After hearing from a member that things felt “too business-oriented,” he shifted the culture entirely. Meetings now include emotional check-ins, storytelling, casual conversation, and even games. The goal? To create the support system that didn’t exist when many of these young people were sick, scared, or misunderstood.
“The work we do creates external change,” Kirk explained, “but that can only happen when the internal community is thriving and engaged.”
Championing the Power of Youth Perspective
Kirk has seen firsthand what adults, even well-meaning ones, often miss:
Kids with lived experience bring creativity, insight, and clarity that can reshape entire systems.
It’s why NPYA gives young advocates complete freedom to contribute across committees, share their ideas, and take ownership of the movement.
“Never underestimate a kid with an idea,” he says. “It could change the world.”
He believes the path forward requires young survivors to stand beside parents, physicians, and legislators—not behind them.
Where Policy Meets Lived Experience
Kirk has spent time in Washington, D.C., meeting with lawmakers, scientists, and leaders across the neuroimmune community. What surprised him most was not how much data mattered—but how much stories mattered.
“Emotion is power,” he said. “Legislators were incredibly receptive when anecdotal evidence was paired with science.”
It’s a reminder that behind every statistic is a child, a family, a future waiting to be reclaimed.
A Partnership Rooted in Shared Values
Kirk speaks openly about his admiration for the Look. Foundation, and the values that unite NPYA and Look. at the deepest level: collaboration, humility, and impact over ego.
“Advocacy isn’t about prestige,” he said. “It’s about making necessary sacrifices to create change. Look. shares those values, and together we’ve amplified the youth voice in ways I’m so proud of.”
That collaboration was on full display at the 2024 Look. Walk, where Kirk served as a Team Captain, a role he doesn’t take lightly.
The Look. Walk: A Moment of Pride and Purpose
For Kirk, the Look. Walk wasn’t just an event, it was a personal milestone.
“I felt honored,” he says. “Look. is achieving everything I stand for, helping youth reach their potential by subsidizing treatment. It saved my life, and it will save others.”
He hopes participants walked away with a deeper understanding of what happens when families, survivors, youth advocates, and organizations stand side by side. Not as separate groups—but as a movement.
Looking Ahead: What Success Means in Five Years
If Kirk has his way, the next five years will bring a transformation in awareness, acceptance, and understanding.
Success isn’t just measured in legislation passed or membership numbers—though those matter. He wants a world where:
● Every survivor can say “I have PANS/PANDAS” without hesitation
● Neuroimmune disorders are recognized in mainstream mental health conversations
● Doctors understand how infection can catalyze mental illness
● Early diagnosis becomes the norm, not the exception
“Awareness is everything,” Kirk shared. “It saved me. And it can save so many others.”
His Message to Young People: Your Story Is Power
Kirk knows that stepping into advocacy requires courage—especially when your past holds pain. But he encourages youth to begin with reflection, guided support, and trust in their own voice.
“Understand yourself. Understand what you’ve been through. That’s how you make a difference. And if your path involves PANS/PANDAS—NPYA is the place for you.”
A Small but Mighty Movement Changing the World
Kirk often quotes Margaret Mead:
“Never doubt that a small group of thoughtful, committed citizens can change the world.”
He believes—with absolute certainty—that the PANS/PANDAS community is that group.
“We chose to look for root causes when others didn’t. We choose to believe in something that feels so right, even without all the science yet. And together, we will change the world.”
Youth. Families. Organizations like Look. and NPYA.
Side by side.
Walking forward.
Changing futures.
One story at a time.