As we wrapped up our 2021 PANS Awareness events in which so many of you donated and fundraised, I came across an SOS email I had sent to my board in January 2019. This was the same month we hosted our first ever PANS/PANDAS CME event and less than a year after receiving our official IRS nonprofit status. It read, “So… this isn’t good. So far, we have only 31 registrants for the webinar.” We hosted four CME events in 2019 and struggled with attendance for all of them. Jessica Gavin and I had several conversations that year in which I complained (a lot) about how desperately we needed funding to reach physicians so they’d know these events were available. That October, something very unorthodox in the nonprofit world happened. Jessica spearheaded a campaign not for PRAI, the organization she founded, but for Neuroimmune, and many of you helped raise over $100k to begin outreach to tens of thousands of physicians. That was the beginning of Neuroimmune reaching thousands of medical clinicians so they could learn to help our families, and 31 medical clinicians turned into 2000 in under two years and over 4000 in under three years.
It’s easy to become cynical when so many doors have been slammed in our faces, but many of you, working together, have been drivers of major and meaningful change. When I stopped to reflect on that as I read and re-read “only 31 registrants,” I was incredibly proud of this community. I think people believe I have PANS figured out in my house—that maybe I don’t struggle like every other PANS parent, but I do, and our family does, in a very big way. This is why I am also tremendously grateful to each of you who have lessened the burden that all of our families carry. Everyone knows a PANS parent barely has the time to brush their own teeth, let alone revolutionize the medical community’s understanding of neuropsychiatric illnesses, but it’s happening thanks to many acts, great and small, from this community.
Nelson Mandela said, “It always seems impossible until it’s done,” and though it seems impossible, if 31 can become 2000, and 2000 can become 4000, then 4000 can become 24,000, and 24,000 can become 100,000. One excellent PANS clinic can become 100. A few PANS studies can become so much research that no physician, scientist, or insurance company can ignore it. I truly believe this community can move mountains together. I hope a few years from now, I’ll stumble upon this, and I hope I will read and re-read “4000” with the same incredulity I felt seeing “31.” And when that happens, you’ll be receiving a letter from me again, quoting a line from the Wizard of Oz: “We always had the power, my dears. We just had to learn it for ourselves.”
It really is an honor and privilege to do this work, and I’m so grateful to everyone who once again contributed to making this a reality. I hope the next time you hear the word “controversy” pertaining to neuroimmune disorders, it’s in the context of how ridiculous it was that it took so many years for understanding of how inflammation impacts the brain to be accepted and how wonderful it is that those days are in the past.
Thank you to each of you who brought hope and relief to families. Our work would be impossible without your kindness, dedication, and generosity.
Together, we are changing how the medical community views neuropsychiatric illnesses.
Executive Director and Founder
Click on the image to view the PDF of our Impact Report 2022