One Reason to Walk 2026 | The Path Forward
Behind every person who takes part in the Steppin’ Out for PANS PANDAS 2 & 5 km walk is a reason.
In the weeks leading up to Steppin’ Out, we’re sharing stories from members of our PANS/PANDAS community about why they walk and why greater awareness, research and access to care matter.
We’ll continue adding stories to this page as we hear from participants across Canada.
Kathryn & Michael | Stouffville, Ontario
Why We Walk
We are a family of four from Stouffville, Ontario, just north of Toronto. Ten years ago, when our daughter was nine years old, PANS entered our family’s life.
At the time, we were a typical busy family with two working parents and two children. Then, seemingly out of nowhere, everything changed.
Our daughter began losing abilities we had once taken for granted. She could no longer write properly. Math became impossible. She was no longer able to remain in a regular classroom. OCD and severe anxiety appeared with an intensity we couldn’t understand.
We were watching our daughter disappear before our eyes, and no one could tell us why.
It took nearly two years before someone finally said the word PANS.
Kathryn and Michael’s daughter at age 9 in 2017, around the time PANS entered their family’s life. Photo shared with permission.
Those two years were filled with doctors, testing, specialists and unanswered questions. Even with access to some of the best children’s hospitals and specialists in the country, we spent years being told to “wait and see.”
But receiving a diagnosis didn’t mean the struggle was over.
A diagnosis didn’t mean easy access to care. We have spent years fighting for treatments that are increasingly available to children with PANS elsewhere but remain difficult or impossible to access here. Getting care has meant travelling across the country, paying out of pocket, seeking the expertise of numerous specialists and relying on countless therapies and supports along the way.
PANS didn’t just change our daughter’s life. It changed our entire family.
We became researchers, advocates, caregivers and care coordinators. The demands of navigating her illness and finding treatment became so great that I eventually had to leave my job.
And yet, with treatment, there is hope.
Today, our daughter is stable. She is building her life, heading off to college, pursuing her future and doing things we once weren’t sure would be possible.
But PANS never feels entirely behind us.
Flares still happen, and when they do, they can rock her world and ours. We live with the uncertainty of never knowing whether the next virus or infection could once again leave her homebound. We worry about losing access to the limited care that has helped her get well.
Perhaps the most shocking part is that our story isn’t unusual.
So many families living with PANS/PANDAS spend years searching for answers. Children lose precious time. Parents find themselves navigating complicated systems and fighting simply to access appropriate treatment.
And it can happen to any family.
That’s why we walk.
We walk for earlier recognition. For better research. For accessible treatment. For doctors who know what to look for. For families still sitting in waiting rooms being told to “wait and see” while their child disappears before their eyes.
After ten years, we know how far our daughter has come and how access to appropriate treatment can change the lives of children with PANS.
“We walk because every child deserves the chance to get their life back.”
— Kathryn & Michael, Stouffville, Ontario
More Reasons to Walk
Over the coming weeks, we’ll continue adding stories from families, parents and people with lived experience from across the PANS/PANDAS community.
Every story is different. Together, they show why greater awareness, earlier recognition, research and access to appropriate care matter.
Steppin’ Out with Us
Every story and every step helps raise awareness of PANS/PANDAS and the need for better recognition, research and access to care.
Learn more about the Steppin’ Out for PANS PANDAS 2 & 5 km walk, find a location near you, register or support a participant.
Can’t make it to one of our in-person locations? Join virtually and gather your family, friends or colleagues to Steppin’ Out together in your own community.
