Inflamed Brain Alliance

05/31/2026

Once again, we are taking part in the amazing Inflamed Brain Alliance campaign, asking local landmarks and buildings to light up in green for PANS PANDAS awareness day - 9th October.

Although there is a while to go until we want to see those shining lights, local councils have told us that now is the right time to start sending requests!

You could contact your council directly, or use our template letters, to ask them to consider lighting a landmark (or their own building!) up in green, as part of a global effort to spread awareness of PANS and PANDAS.

Visit https://panspandasuk.org/post/its-time-to-shine/ for more information about this fantastic campaign.

Remember to let us know when you've had an approval, so we can update the campaign organisers and celebrate how amazing our community is!

05/30/2026

Reminder: Our Young Adult Peer Connection Group (18 to 35) meets tomorrow.

💬 Navigating Loneliness and Feeling Isolated

This Zoom gathering is for Canadian adults living with PANS or PANDAS to connect, share, and talk with others who understand.

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

📅 May 31
🕒 3:00 to 4:00 PM PT
Facilitated by Taryn

🔗 Register: https://tinyurl.com/YAMay31

05/24/2026

Feeling isolated while living with PANS or PANDAS can be difficult, especially when others do not fully understand what you are experiencing.

At our next Young Adult Peer Connection Group (18 to 35), we’re opening space for honest conversation about loneliness, disconnection, and finding community while navigating chronic illness.

💬 Navigating Loneliness and Feeling Isolated

This facilitated Zoom gathering is for Canadian adults living with PANS or PANDAS who want connection and shared understanding.

Whether you come to share or simply want to listen, you are welcome.

📅 Sun, May 31, 2026
🕒 3:00 to 4:00 PM PT
Facilitated by Taryn

🔗 Register: https://tinyurl.com/YAMay31

05/21/2026

Sometimes, in the middle of the hard, there are still small moments that bring a sense of calm, comfort, or hope. ✨

This 10-second lake glimmer felt like one of those moments for us.

In the PANS/PANDAS community, the term “glimmer” can mean a tiny moment that helps your nervous system feel safe — a deep breath, a laugh, sunlight on the water, a good day, a song, a hug, or simply making it through the day.

We’d love to hear from you:
What’s a glimmer you’ve experienced lately? 💚

Share in the comments if you feel comfortable. Your glimmer might help someone else feel a little less alone.

05/17/2026

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

💬 Navigating Loneliness and Feeling Isolated

Living with PANS or PANDAS as an adult can sometimes feel lonely and difficult to explain to others. Symptoms can affect friendships, school, work, and everyday connection.

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

Whether you are feeling disconnected, misunderstood, or simply looking for others who understand the experience, you are welcome.

📅 Sun, May 31, 2026
🕒 3:00 to 4:00 PM PT
📍 Zoom Canada wide
Facilitated by Taryn

🔗 Register: https://tinyurl.com/YAMay31

05/17/2026

Something powerful is taking shape across the Canadian PANS/PANDAS community.

Inflamed Brain Alliance is excited to share the first look at our 2nd biennial national conference:

🦋 Rising Above PANS/PANDAS
Transforming Pathways to Health

📍 Toronto, Ontario
📅 May 17–18 (Mon & Tue), 2027

This gathering will bring together patients, families, clinicians, researchers, educators, advocates, and allied professionals from across Canada and beyond to support early recognition, strengthen collaboration, and improve care pathways for Canadians affected by PANS/PANDAS.

Plans are also underway for preconference activities on Sunday, May 16, for families, alongside a physician-led consensus guideline development day. Medical accreditation will again be pursued for the 2027 conference.

More details on the vision, speakers, partnerships, and opportunities will be shared in the months ahead.

For now, mark your 2027 calendar and follow along as more details emerge.

We’re shaping change together.

Excited about this conference?
👍 Like this post and add in the comments:

❤️ = hoping to attend virtually
❤️❤️ = hoping to attend in person
❤️❤️❤️ = attended the 2025 conference and hoping to join us again in 2027

05/16/2026

Curious? 👍 this post and see what unfolds tomorrow.

05/15/2026

Congratulations to the Virginia Alliance for PANS/PANDAS Action (VA4PA) and the entire Virginia advocacy community on this historic and hard-earned milestone, your leadership and persistence are helping pave the way for families everywhere. 💚

Attention Virginia PANS and PANDAS warriors: Your passion and commitment made history today! Governor Abigail Spanberger just signed HB328, which updates Virginia’s Essential Health Benefits (EHB) benchmark plan and includes coverage for medically necessary care for PANS and PANDAS.

This makes Virginia the FIRST STATE IN THE COUNTRY to explicitly include PANS and PANDAS in its EHB benchmark plan and helps set the baseline for what individual and small-group insurance plans in Virginia are required to cover. In practical terms, this strengthens access to care and reinforces that treatment for PANS and PANDAS is medically necessary, not optional.

We are deeply grateful to Governor Spanberger, Delegates Rip Sullivan, Patrick Hope, Adele McClure and all sponsors for their leadership. We also thank the many advocates and families whose persistence made this possible, including those who have worked tirelessly behind the scenes on behalf of the Virginia Alliance for PANS/PANDAS Action (VA4PA).

While this is real progress for Virginia, our work continues here in VA and across the country to ensure access, awareness, and equity in care for all affected by PANS and PANDAS.

05/15/2026

A heartfelt thank you to our Hope Companions Peer Support Leaders who continue to show up with compassion, understanding, and care for others in our community across Canada.

These peer support spaces are built through lived experience, connection, and the understanding that every caregiver, young adult, and family journey is unique.

As a volunteer-driven Canadian charity, we continue to learn, listen, and grow alongside our community to create supportive spaces where people feel heard, supported, and less alone.

We are deeply grateful to the volunteers who generously give their time, emotional energy, and lived experience to help others navigate difficult PANS/PANDAS journeys with hope and connection.

Interested in helping others feel less alone?
Our Peer Support Leadership Program continues to grow.

Reach out to Nancy by filling out the form to learn more: www.inflamedbrain.org/become-a-peer-supporter

05/12/2026

☀️ Our Hope Companions Summer Survival Guide is Here ☀️

Summer can bring both joy and challenges for families navigating PANS/PANDAS. Over the past week, caregivers in our community generously shared their lived experiences, insights, and encouragement to help create something meaningful for others walking this journey.

Together, we created a practical and compassionate Summer Survival Guide focused on:
• Gentle structure & flexibility
• Emotional regulation & transitions
• Sleep & downtime
• Low-demand activities
• Caregiver burnout & boundaries

One message came through clearly again and again: summer does not need to look “perfect” to be supportive. For many families, protecting regulation, connection, flexibility, and rest matters far more than packed schedules or high expectations.

We’re grateful to every caregiver who contributed their voice and wisdom to this resource. 🌻

You are not alone.