September 2026 Newsletter
UPCOMING EVENTS
THERE’S STILL TIME TO REGISTER FOR THE 2026 LOOK. WALK!
On October 3rd, let’s make this the biggest representation of the PANS/PANDAS community ever. Show up with us on Boston Common or bring the Look. Walk to your own community through Beyond Boston. Start a team. Bring your family and friends. Make your state count.
BEYOND BOSTON WALKERS: Register by this week to make sure your Look. Walk swag arrives in time for October 3rd!
Let’s fill Boston Common. Let’s fill the map. Let’s show how strong this community is.
REGISTER FOR THE FIRST LOOK. CLASSIC!
On Monday, October 19, we’re heading to Marshfield Country Club for the inaugural Look. Classic: Changing the Course for PANS/PANDAS Families.
Join us for an unforgettable day of golf, on-course challenges, dinner, inspiring stories, and community, all while raising critical funds to support children, young adults, and families affected by PANS and PANDAS. Whether you gather a foursome, become a sponsor, or support the event, you’ll be helping Look. Foundation continue our work to raise awareness, provide support, expand access to resources, and make sure families navigating these devastating illnesses know they are not alone.
SURVEYS
WE NEED YOUR VOICE! MASS GENERAL HAS ANNOUNCED THAT IT WILL CLOSE ITS FORMAL PANS/PANDAS PROGRAM.
Mass General has announced that it will close its formal PANS/PANDAS program effective January 1, 2027.
Look. has created a NATIONAL survey to document what this closure means for patients, families, and the broader PANS/PANDAS community. Whether you received care at MGH, are currently a patient, hoped to access the program, or are a medical provider, advocate, legislator, or community member concerned about this loss, we need to hear from you. Your response can help show who is affected, what care is being lost, and where patients are supposed to go. For 15 years, our community has fought to move PANS/PANDAS recognition, treatment, and access to care forward. We cannot afford to go backward. Please take the survey and share it widely. Every response matters.
CONFERENCES
ONE BODY: THE ALEX MANFULL FUND’S IN-PERSON SYMPOSIUM
Clinicians & researchers: Register for The Alex Manfull Fund Symposium on November 14th in Portsmouth, NH. This event brings together leading experts to explore the research & clinical advances in PANS/PANDAS & other immune-mediated neuropsychiatric disorders.
REGISTRATION IS OPEN!
INFLAMMATORY BRAIN DISORDERS CONFERENCE 2027
May 20 – 21, 2027
A virtual CME event — 12.0 AMA PRA Category 1 Credits™
8:00 am – 4:30 pm PT each day
Hosted by Neuroimmune Institute in partnership with Neuroimmune Foundation and accredited in collaboration with The Wisconsin Medical Society.
The Inflammatory Brain Disorders Conference features nationally and internationally renowned experts skilled in diagnostic and therapeutic approaches who will present a diverse range of emerging clinical and research challenges, insights, and advances in the field of inflammatory brain disorders. Presentations are carefully selected to familiarize attendees with rapidly developing research and to educate clinicians on the latest understanding of treatment options.
MDs/DOs/NPs/PAs: Claim your free waiver while supplies last.
MAPS “RE-DEFINING AUTISM” CONFERENCE
Four days of learning, connection and possibility. What an incredible four days at the MAPS “Re-Defining Autism” Conference! MAPS stands for the Medical Academy of Pediatric Special Needs. It brings together physicians and other healthcare professionals who are willing to LOOK deeper into complex medical issues that can often coexist with autism and other neurodevelopmental conditions. To look beyond a diagnosis or symptom and ask what might be at the root of it. You can imagine, Look. felt right at home. We met practitioner after practitioner doing incredible work, asking hard questions, continuing to learn and looking beyond what is immediately visible to better understand what may be happening medically with the children and young adults in their care. It was honestly awe-inspiring. At a time when so many families with medically complex children struggle to find practitioners willing to look deeper, being surrounded by hundreds of healthcare professionals who want to learn more gave us tremendous hope.
Members of our Look. Foundation team, Executive Director Jennifer Vitelli and Board Members Melissa Glynn-Hyman, LICSW, and Michelle Pinto, PhD, MSN, RN, CNE, had the opportunity to listen, learn, share resources and make connections with practitioners from across the country. Many had never heard of Look. before and were genuinely excited to learn that there is an organization they can connect their PANS/PANDAS patients and families with for education, support and resources. A huge thank you to Honey Rinicella, Executive Director of MAPS, and the entire MAPS team for creating a space where curiosity is encouraged, knowledge is shared and practitioners can learn from one another. That gives us hope. And we have a feeling some of the connections made over those four days are only the beginning.
STUDIES
POSTMORTEM EVIDENCE OF BABESIA & BARTONELLA INFECTIONS IN CHRONICALLY ILL SUICIDAL YOUNG PEOPLE
Our hearts are with the six families behind this important new research. A newly published study in Parasites & Vectors found molecular evidence of Babesia, Bartonella, or both in five of six chronically ill young people who died by suicide. Two had been diagnosed with PANDAS. The findings raise important questions about the potential connections between infection, inflammation, neuropsychiatric symptoms, and suicidality, and highlight the need for further research. We honor these young lives and are deeply grateful to their families for allowing their stories and samples to contribute to science and help seek answers for other families.
IN THE NEWS
PANS/PANDAS FEATURE IN NEW YORK MAGAZINE
“WHEN A SORE THROAT ATTACKS THE BRAIN.”
We have some very welcome news! PANS & PANDAS are taking the national stage with a groundbreaking feature in New York Magazine by renowned author and PANS mom Jessica Slice. The piece brings much-needed visibility to the gap between research and clinical practice and the real human cost for families.
The Alex Manfull Fund and Look. Foundation are proud to support Jessica and continue this important conversation through an upcoming special series. Stay tuned!
Now, we need our community to join the conversation. Read the article and share your experience in the comments. Whether PANS/PANDAS has impacted your child, family, patients, or someone you love, your voice matters.
Our children deserve to be taken seriously. They deserve care.
VOGUE PUBLISHES JESSICA SLICE’S ARTICLE ON PANS & NEUROINFLAMMATION
“Who Shows Up—and Who Vanishes—When Your Kid Is in Trouble?”
Vogue is shining an important light on PANS through a deeply personal story about one family’s experience navigating this devastating illness. The article highlights the profound impact PANS can have on children and families, as well as the isolation and challenges they can face along the way. For a condition that affects so many families, having PANS featured in a major publication like Vogue is a meaningful step toward bringing greater visibility and awareness to this community. We’re grateful to see these families’ experiences reaching such a wide audience.
The Look. Foundation is dedicated to changing the course of mental health by ensuring that no child or young adult with PANS/PANDAS is missed.
