AAP Pushback, PANDAS Awareness Day, Upcoming Support Group Sep 18th & More...
Published about 2 months ago • 3 min read
September 2025 🍁
Hi Reader,
As we approach fall and the start of a new school year, we are reminded how fast life changes. However, there is one thing will never change, our commitment to fighting for you and your family.
Speaking of fighting, there is some news we think you will find interesting.
PANDAS Network Challenges AAP’s PANS Report to Protect IVIG Access for Families
On December 17th of 2024 the American Academy of Pediatrics published new PANS guidelines that were intended to be a survey of evidence not a clinical practice guideline (see quote below).
"Because they are limited by the present level of evidence on the topic, the findings are presented as a report rather than a clinical practice guideline" - AAP Board of Directors
However, despite the disclaimer, the published paper is now being misinterpreted by pediatricians and health insurance companies to justify the denial of IVIG treatment.
The PANDAS Network in collaboration with Claimable and other partners, published a detailed rebuttal letter 1) urging the AAP to retract the paper, 2) for health insurance companies to cease the denial of care, 3) and for all IVIG-based denials of care, due to the publication of the AAP guidelines, be immediately reconsidered.
Our rebuttal, made possible by Warris Bokhari, CEO of Claimable, and his team, outlines the harm this causes and provides a clear, evidence-based response. You can read the full rebuttal here: Joint Statement Concerning AAP PANS Report.
Please save this rebuttal letter, share it with your doctor, and, if you’re advocating for PANDAS/PANS treatment in your state, pass it along to legislators. Your voice alone can drive change!
93 Landmarks Glow Green for PANDAS/PANS Awareness: Join Us to Light Up Hope!
Want to light up a local landmark? Let us know, and we’ll help you spotlight the impact of PANDAS/PANS in your community!
Images From Aspire (aspire.care)
High School Senior’s PANDAS Journey Inspires $3,000 Grant for Research
Raymond Lanfear, a senior at Clawson High School in Michigan, stood nervously at the podium during the National Honor Society’s (NHS) annual charity dinner last spring. The room buzzed with warmth, filled with friends, classmates, and community members who had come together for a cause close to Raymond’s heart.
Since he was eight, Raymond had fought a quiet but fierce battle against PANDAS/PANS, a condition that challenged his childhood but never his spirit. Nearly a decade later he found himself admirably turning his personal struggle into hope for others.
Raymond and his NHS classmates (left), pictured from left to right Amy Prochoska and her daughter Rachel Bennett and Raymond Lanfear and his mother Denise.
You could feel the pride in the air as Raymond and his NHS peers announced a $3,000 research grant for Columbia University’s Agalliu Lab, donated through PANDAS Network. This wasn’t just a number—it was the result of a year’s worth of heart and hustle. The money was raised through various evens such as 'PowderPuff' football games, 'PeachFuzz' volleyball tournaments, and pouring hot chocolate and serving donuts on chilly mornings, all to raise funds for PANDAS/PANS biomedical research.
At the dinner, Raymond shared his story, his voice steady as he spoke of his journey to overcome PANDAS symptoms. Beside him, his mom, Denise, spoke of their family’s healing, her words wrapping the room in hope. Amy Prochoska and her daughter Rachel Bennett, also impacted by PANDAS/PANS at a young age, joined them, sharing her path to recovery and the importance of raising awareness.
We at the PANDAS Network are inspired by these selflessness of these bright young people. Thank you Raymond and friends for your efforts! You can watch his moving testimonial on YouTube (above).
Find Healing and Connection at Our PANDAS/PANS Support Group with Rahasa’s Meditation
Mark your calendars for our next support group on Thursday, September 18th, from 5:30–6:30 PM EST, featuring a 30-minute meditation and sound bath led by Rahasa for healing and connection.
Your unwavering support lights the way for families navigating PANDAS/PANS, and together, we’re making a difference—one story, one landmark, one voice at a time.
Please consider donating to PANDAS Network or starting a Facebook fundraiser to fund advocacy efforts, research grants, and support programs. Thank you for standing with us to bring hope and healing to those affected by PANDAS/PANS. Together we can make a difference.
🎃 October 2025 Hi Reader, October 9th was World PANS/PANDAS Awareness Day, and landmarks across the globe were lit in red and green to raise awareness for PANDAS/PANS. I am still surprised at how fast the PANDAS/PANS community is growing, as there was record-breaking impact, turning numerous landmarks red and green across Canada, the UK, Sweden, Italy, Poland, Spain, South America, and the U.S. In other news, the National PANDAS Youth Alliance and young adults who have overcome PANDAS/PANS...
🎃 October 2025 Hi Reader, October 9th was World PANS/PANDAS Awareness Day, and landmarks across the globe were lit in red and green to raise awareness for PANDAS/PANS. I am still surprised at how fast the PANDAS/PANS community is growing, as there was record-breaking impact, turning numerous landmarks red and green across Canada, the UK, Sweden, Italy, Poland, Spain, South America, and the U.S. In other news, the National PANDAS Youth Alliance and young adults who have overcome PANDAS/PANS...
Hi Reader, The PANDAS Network was founded in 2013 with the goal of accelerating our scientific understanding of PANDAS/PANS and building a supportive community that can offer advice, encouragement, and hope for those deeply affected by PANDAS/PANS. Fast forward twelve years later and we are still doing just that. We are excited to share two new opportunities with you that align with our mission: Help researchers at Columbia University better understand PANDAS/PANS (details below). Join our...