CalCoalition for Pans/Pandas Advocacy

The Look. Foundation, based out of Scituate, seeks to communicate the importance of PANS and PANDAS screenings and ensures that this disease is no longer overlooked. Over the years, we have seen a rise in the occurrence of PANS/PANDAS on the South Shore and many families have shared their stories of hardship and watching their children suffer with the associated effects of these disorders.

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) occur after an infection, most commonly a strep infection. Brain inflammation occurs when the body's immune system mistakenly attacks healthy brain cells, leading to autoimmune processes that affect central nervous system function. An affected child generally has a sudden, dramatic change in personality, displayed as obsessive-compulsive disorder (OCD), anxiety, tics, or other abnormal movements, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

In the FY27 State Budget, I have been able to secure $25,000 for the LOOK. foundation in Amendment 1070 to raise awareness and support the treatment of PANS/PANDAS. Unfortunately, many children go untreated for these diseases, sometimes experiencing debilitating symptoms for years until finding the cause and visiting a PANDAS specialist. I am hopeful that this funding will aid in the hard work that LOOK. continues to do for young people throughout our community.

🌍 2026 — Year 3 of our global partnership

Last year, 230+ landmarks worldwide lit up green. Now in its third year, our global partnership of 16 PANS/PANDAS advocacy organizations is coming together once again — and this year, we’re aiming even higher.

💚 Why green?

Green is the color of mental health awareness. PANS and PANDAS can look psychiatric, but they are rooted in immune and medical dysfunction. Lighting up in green helps open the door to understanding, compassion, and change.

✨ New this year: everyone can take part.

Light up your home or office during the week leading up to October 9:

• Green bulbs
• Outdoor lighting
• Window displays

Together — organizations, landmarks, families, and communities — we’re shining a light on the urgent need for multidisciplinary care worldwide.

Stay tuned for monthly landmark updates — shared on the 9th of each month!

WAHOOO!!! 🎉🥳🎊

We finally did it!! 14 years in the making and we finally got this bill passed!!! Thank you to every single person in Connecticut along the road during the past 14 years. UNANIMOUS.

From explaining what the heck is this thing about panda bears to oh it’s controversial to it’s too expensive to finally - PANS PANDAS patients must have appropriate healthcare coverage for this devastating disorder.

14 years ago, Senator Crisco, who loved to call himself the mandate King said insurance companies are too greedy and allowing me to talk about PANS for 15 minutes so I could rebut the AAP’s inaccurate statement. To State Representative Kerry Wood saying this year, let’s get this done! We are beyond grateful for being our champion throughout this process. We could not have done it without you!!!! Thank you to Speaker Matt Ritter for bringing it to the House floor. Thank you to State Senator Jorge Cabrera for getting it to the Senate floor. Thank you to State Senator Derek Slap for representing at least 14 families in your district. Thank you to State Senator Tony Hwang for your support in making sure discussion was swift on the floor.

Thank you to Liz for being the best partner in this process. Thank you to all the long haulers that were there from the beginning Jim Carson, Liz Williams, Paula Penna, and Katie Zigmond! Thank you to all the incredible mothers who showed up to testify this year - Liz Salsedo, Paula Penna, Lauren Brush, and Barbara Rutowoski. Thank you to all those that wrote testimony and continually called your legislators about this bill. Thank you to every single representative and senator who cosponsored the bill. I know this will save and improve the lives of those with PANS PANDAS.

Now let’s get healed!

Xo Gabriella True

Our community, caregivers, clinicians, and those with lived experience have a chance to be heard and make a real impact by participating in this important PANS/PANDAS research survey. Please consider taking a few minutes and sharing with others 💙🧠✨

Help Shape the Future of Psychotherapy in PANS/PANDAS

We’re inviting caregivers, clinicians, and individuals with lived experience to take part in an important research survey led by the MIND Global Council.

This brief 20-minute survey is designed to help build the evidence base for psychotherapy guidelines in PANS/PANDAS and related neuroimmune conditions. Your voice will directly contribute to developing more informed, ethical, and effective approaches to care.

There is a critical need for research that helps clinicians better understand these complex presentations—so that care is guided by thoughtful, evidence-based approaches rather than misinterpretation. When we better understand the role of biology, we can improve outcomes for individuals and families navigating these conditions.

Who can participate?
• Individuals with lived experience
• Caregivers
• Clinicians

If you are both a caregiver and a clinician, you are welcome to complete both surveys.

We would be so grateful if you could also help share this with others who may be interested. Thank you for partnering with the MIND Global Council in advancing care and creating meaningful change.

CLINICIAN SURVEY
https://chapmanu.co1.qualtrics.com/jfe/form/SV_eVUFn6VjUP38OYS

PARENT SURVEY
https://chapmanu.co1.qualtrics.com/jfe/form/SV_6W4T1lQW5qeda3Y

Last week, we watched twelve young people from a Youth Board in the UK stand in front of Members of Parliament and share their experiences of PANS and PANDAS with such courage and honesty. It was powerful to see their voices taken seriously and given the space they deserve. 💬✨

As a moms here in California, it’s hard not to feel the contrast. Families like ours have been asking for that same recognition and willingness to listen for 5 years now. 💔

We see every day how much these children go through, how hard they fight to be understood, and how often their experiences are overlooked. Our kids deserve to be heard not only in private conversations, but in the rooms where decisions are made. Their voices matter, and they should help shape the awareness, policies, and care that affect their lives. 🧠💙

Seeing what is happening elsewhere gives us hope. It shows that when leaders truly listen, change is possible. I just hope we can get there here, too. 🤍

National PANDAS/PANS Youth Alliance ❤️
California Senate Democrats, California Assembly Republicans California Department of Education, California Department of Public Health, California Teachers Association, NEA Today, California Nurses Association, National Nurses United, AFL-CIO, SEIU

NEW YORK PANS/PANDAS
🚨

Congratulations!!!🎉

🎉🎉🎉LB762, my priority bill for this session, is officially signed into law!! Good news happens a little at a time, and each small win along the way has given me so much hope for the PANS/PANDAS community. Today, we celebrate that kids like Violet and Belle will receive medical treatment without parents having to worry about insurance denials or impossible bills.

A BIG thank you to everyone who helped get this bill over the finish line! From volunteers to senators to Governor Pillen, the passage of LB762 demonstrates a strong, bipartisan commitment to a healthy Nebraska!