“Every Voice Mattered”: How Lisa Grisolia Helped Lay the Foundation for PANS/PANDAS Advocacy in New England
“Every Voice Mattered”: How Lisa Grisolia Helped Lay the Foundation for PANS/PANDAS Advocacy in New England
Movements don’t usually start with institutions or infrastructure.
They start with parents, often before there is language, awareness, or support.
For Lisa Grisolia, advocacy began long before there was a formal organization, a conference, or a walk on the Boston Common. It began in 2010, when families affected by PANS and PANDAS had very few places to turn and even fewer people who understood what they were facing.
What Lisa helped build in those early years became part of the foundation on which today’s PANS/PANDAS advocacy stands.
The First Support Group: Creating Space When None Existed
In 2010, information about PANS and PANDAS was scarce. Facebook was still in its infancy. There were no established local networks for parents navigating sudden and frightening changes in their children’s mental health.
“I came across a clip of Beth Maloney and her book Saving Sammy,” Lisa recalls. “I reached out to her, and she encouraged me to start a support group. She even sent me the original PANS/PANDAS information cards she had created.”
That encouragement mattered.
Lisa started what became one of the first PANS/PANDAS parent support groups in New England, creating a place for families to gather, share experiences, and learn from one another, often while still searching for answers themselves.
“In the early days, what really stands out is that every voice mattered,” Lisa says. “The fight for sick children and families, including our own, gave me the courage not to be silent.”
Parents came together not as experts, but as allies. They shared what helped, what didn’t, and what questions still felt overwhelming. Over time, trusted professionals began attending as well, including Peggy Chapman, MSN, PNMHCS-BC, a medical provider who treated PANS/PANDAS patients, helping families make sense of complex symptoms, treatment options, and medical questions. Later, Melissa Glynn-Hyman, LICSW, deeply engaged in the PANS/PANDAS community, joined to help co-facilitate meetings when NE PANS began hosting them and went on to serve as a board member of NE PANS and is now currently serving on the board of the Look. Foundation.
What Lisa created wasn’t just a support group. It was an early lifeline.
From Grassroots to Organization: Founding NE PANS
As the need for broader education and advocacy became clear, Lisa joined with other parent leaders to take the next step.
In 2013, Lisa became one of the founding members of the New England PANS/PANDAS Association (NE PANS), alongside several individuals who continue to lead this work today, including Look. Foundation President Cathy Witkos, Executive Director Jennifer Vitelli.
Together, this founding group helped formalize what had begun in living rooms and support meetings.
An early milestone in NE PANS’ history was organizing the first PANS/PANDAS National Conference, a pivotal moment that brought together more than 400 medical providers and caregivers from across the U.S., as well as participants from England and Canada, helping to lay the foundation for a national PANS/PANDAS community.
“Planning that conference took a lot of hard work and determination,” Lisa reflects. “We amplified family voices and created something bigger than we realized at the time.”
The response was overwhelming. Families, clinicians, researchers, and advocates filled the room.
“That conference was when the wheels really started turning,” Lisa says. “We realized that having so many powerful people in one place could make a difference.”
Watching the Movement Expand
Over the years, Lisa has watched the movement expand from small support meetings to large-scale public awareness efforts, supporting the work as a board member and longtime advocate.
She has seen advocacy grow from quiet conversations to visible community action, and from informal networks to policy-level engagement.
One of the most meaningful milestones was the passage of legislation establishing a PANS/PANDAS advisory council connected to the Massachusetts Department of Public Health, a significant step toward broader recognition and more consistent approaches to care.
“What makes me most proud isn’t just the awareness we raised,” Lisa says. “It’s the way we united families, doctors, researchers, and advocates. We didn’t just start a conversation. We built a community.”
That sense of community is what has allowed the work to endure and evolve.
A Continued Commitment Through the Look. Foundation
Today, Lisa serves on the Board of Directors of the Look. Foundation, continuing a commitment that has spanned more than a decade.
“I’m very proud of what we accomplished with NE PANS,” she says. “And I’m excited to be part of Look. With a larger leadership team and more expertise, we’re able to think more strategically about how to move this work forward. Combining forces only made sense.”
For Lisa, this next chapter is about strengthening what already exists, improving clinical understanding, expanding early identification, and ensuring families are supported sooner in their journey.
Looking Ahead: What Still Needs to Change
When asked what she hopes will change in the coming years, Lisa is clear.
“Clinically, I hope the most up-to-date data is used for diagnosis and treatment. Politically, I hope screening bills pass so children can be treated sooner.”
Earlier recognition means earlier care and fewer families left searching for answers alone.
“These changes would allow Look. to focus even more on supporting families, raising awareness, and educating communities.”
A Message to the Next Generation
After years of advocacy, Lisa’s message to those carrying this work forward is one of gratitude and perspective.
“Thank you for stepping up and continuing this important work, every role matters, progress starts with small steps, but they all count.”
Lisa Grisolia’s legacy isn’t about a single event or title. It’s about showing up early, staying committed, and helping build the structures that allow a movement to grow.
Because she helped create space when none existed, thousands of families now know they are not alone.
That foundation continues to carry families forward.