Inflamed Brain Alliance

SHARE YOUR STORY. IMPROVE CARE.

The Canadian PANS Registry is open to any child or adult in Canada with a diagnosed or suspected case of PANS or PANDAS.

Participants share information about:
• Symptoms and health history
• Diagnosis experiences
• Treatments received
• Education and school impacts
• Healthcare access
• Financial impacts
• Research priorities

The information collected may help improve understanding of PANS and PANDAS in Canada and support future research, advocacy, and care planning.

Participation is voluntary, confidential, and free of charge.

It's never too late to participate.

The Canadian PANS Registry is an ongoing research study, and participants can join at any point in their PANS/PANDAS journey, including those who are in remission, were diagnosed years ago, or are still searching for answers.

www.inflamedbrain.org/pans-registry

We’re continuing our Adult Peer Connection Group (18 to 35) this June.

💬 Summer Heat Survival: Managing Symptoms & Triggers

Summer can bring unique challenges for adults living with PANS or PANDAS. Hot weather, changes in routine, travel, disrupted sleep, and seasonal allergies can sometimes affect symptoms and overall well-being.

This facilitated Zoom gathering is a peer connection space for Canadian adults who want practical ideas, shared understanding, and connection. Not therapy. Not medical advice. Just people who get it.

Whether you're navigating symptom flares, adjusting to summer routines, or looking to connect with others who understand, you are welcome.

📅 Sun, June 28, 2026
🕒 3:00 to 4:00 PM PT
📍 Zoom Canada-wide
Facilitated by Taryn

🔗 Register: https://tinyurl.com/AdultJune28

Whether you're advocating, caregiving, comforting, researching, driving to appointments, or simply being a steady presence through the challenges of PANS/PANDAS, your dedication matters.

Thank you for the strength, love, and resilience you bring to your families and our community.

Happy Father's Day from all of us at Inflamed Brain Alliance. 💚

Reminder: Our Hope Companions caregiver peer support meeting is tomorrow.

💬 Coping Tools for the Tough Days: Micro Yoga + Practical Skills

Join us for a supportive gathering focused on simple, accessible tools for difficult days. Jessica will share gentle micro yoga practices and practical self-regulation strategies that can help caregivers find moments of calm, grounding, and support.

No yoga experience is required.

This Zoom gathering is for Canadian caregivers of those living with PANS/PANDAS to connect with others who understand.

Not therapy. Not medical advice. Just a peer support space.

📅 June 17
⏰ 6:30–7:30 PM ET
Facilitated by Jessica

🔗 Register: https://tinyurl.com/CaregiverJune17

🧠 NEW PANS RESEARCH - "In vitro ibuprofen has gene regulatory and anti-inflammatory properties in peripheral blood mononuclear cells of individuals with infection-provoked neurodevelopmental disorders"

Researchers led by Dr. Velda Han and Professor Russell Dale at The Children's Hospital at Westmead and the University of Sydney have published new research exploring how ibuprofen may affect immune pathways in children with infection-triggered neurodevelopmental conditions, including PANS.

The study found evidence of immune and gene-regulation abnormalities in affected children. Using advanced single-cell RNA sequencing, the research team demonstrated that ibuprofen reduced inflammatory immune activity and shifted several dysregulated pathways toward healthier patterns in laboratory testing.

The researchers also reported that families of 18 children observed improvements in symptoms such as emotional regulation, OCD, anxiety, aggression, and rage during infection-related flares when ibuprofen was used.

While this was a small exploratory study and larger clinical trials are needed, the findings add to a growing body of evidence supporting the role of immune-brain interactions in PANS and related conditions.

👏 Congratulations to Dr. Han, Professor Dale, and colleagues on this important contribution to the field.

📖 Read the study: https://doi.org/10.1007/s10787-026-02282-7

Some days are simply harder than others.

When caring for a child with PANS or PANDAS, stress, uncertainty, and emotional exhaustion can build quickly. Finding simple ways to care for yourself during those moments can make a difference.

💬 June Topic: Coping Tools for the Tough Days: Micro Yoga + Practical Skills

Join Jessica for a supportive Hope Companions caregiver gathering focused on practical tools for difficult days. Together we'll explore simple movement, breathing, and self-regulation strategies that can help create moments of calm and grounding throughout the day.

No yoga experience is required.

This facilitated Zoom gathering is for Canadian caregivers of those living with PANS/PANDAS who are looking for connection, encouragement, and support from others who understand.

📅 Wed, June 17, 2026
⏰ 6:30–7:30 PM ET
📍 Zoom (Canada-wide)

🔗 Register: https://tinyurl.com/CaregiverJune17

🌍 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 we already have 49 landmark approvals so far.

💚 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!

What if the key to understanding complex brain disorders lies in connecting the dots across genetics, immunity, infections, and environmental factors?

This question was at the heart of a recent conversation with Dr. Georgia Balsevich, Senior Sector Innovation Manager at Genome Alberta .

We had the opportunity to learn more about Genome Alberta's work advancing genomics and precision health research, while exploring the growing recognition that genetics, environmental exposures, infections, immune function, and brain health are deeply interconnected.

As Inflamed Brain Alliance continues to develop the Canadian PANS Registry, we're exploring how patient-reported data, lived experience, and clinical research can help advance understanding of complex neuroimmune conditions.

Conversations like these reinforce the importance of collaboration across sectors. Progress happens when researchers, clinicians, patients, and organizations come together to share knowledge and explore new perspectives.

We’re encouraged by the areas of alignment between Genome Alberta and Inflamed Brain Alliance and look forward to exploring opportunities to advance research together.

Georgia, thank you for your time, insights, and for sharing more about Genome Alberta's important work.