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  • Emily Johnson

How It All Started

One of the most common questions I get asked is, “Why did you name the group The PANS Party Project? Why party?” Truth be told this is my most favorite question. It’s my favorite because it allows me the opportunity to introduce the why behind the community. It’s also a very important question as it takes someone’s initial curiosity to open not only their mind; but also their heart to a world they may have never known and a community that PANS/PANDAS parents so desperately need.


So why “party?”


Well 415 days after our child “disappeared” I found myself in a very strange place. We had made it through the acute crisis, multiple hospital admissions, and had finally started to see some response to treatment. With the wide wake of trauma and isolation that we were swimming through I searched high and low for communities that would fit my needs. I had found the multiple Facebook groups helpful when it came to trying to find providers or looking to hear what other’s experiences were with different treatments; but all along I still felt like something was missing and I yearned for the ability to have a true tribe.


What I desired was a living, breathing community that held space for both grief and joy. I wanted to see and hear others; not just read their written words. I craved a space that would offer some constructive and positive choice forward through this hell. I wanted accountability partners, cheerleaders and connection to someone who truly understood. I also needed a damn break from all the clinical talk, the chatter about treatments and a space free from unsolicited advice.


I needed a space where I felt fully embraced in the celebration of support and the mess of doing the work to take care of myself. I needed the focus to be 100% on my own physical, mental, emotional and spiritual wellbeing. I needed a new and different scene. Yes, individual therapy and marriage counseling were definitely helpful but there was still a disconnect for me. I needed more.


I needed a party …


A-party-we-didn’t-ask-to-be-invited-to-but-while-we’re-here-we’re-going-to-meet-some-people-and-reap-the-benefits-of-connection-in-a-safe-constructive-way-and-maybe-even-laugh-type-of-party.


When I couldn’t find what I needed I decided to create it. Hence The PANS Party Project was born. I knew deep down that the constructive choice forward was a choice I had to make myself; and no other person nor community was responsible for that choice. But what I also knew was that I learned this through surrounding myself with people doing it and watching others model it. I knew that the deep tool box that I carried with me throughout my personal and professional experiences would lend great support to other parents.


So truly The PANS Party Project was born out of pain.


We are PANS/PANDAS parents turning pain into purpose... and that purpose is to take care of ourselves so we can be there to take care of our children.


With you -


Emily




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