Monday was a big day. I took the kids with me to the state capitol in Austin for a PANDAS/PANS “Meet and Greet,” knowing very little about what to expect. As it turns out, the group responsible for the event, Texas PANDAS/PANS Advocacy & Awareness, is a brand new organization started by parents whose first priority is raising awareness. It is a grass-roots effort led by three or four moms who set out to address the tremendous gaps we have all faced in trying to find resources for our kids and provide ways to connect and work together for change. 

If you’ve been paying attention to Gray Colored Glasses over the past couple of weeks leading up to PANS Awareness Day, you have already realized that our goals are very much aligned.    

After meeting initially with PANS/PANDAS parents, kids and teens, many of whom had driven four or more hours to attend, we set out to distribute informational flyers about PANS/PANDAS and invite our congress men and women to join us from 11:30 to noon to hear brief one-minute family testimonials about our life with this devastating neuropsychiatric disorder. And as the Gray Colored Glasses community already knows, I believe our best bet for raising awareness is through our stories.

So the kids and I did something together that I have never done before. We walked down the hallway in the capitol building and knocked on the door of the congressman for our district, Sam Harless. (The irony here is that our neighbor directly across the street is a Justice of the Peace and has mentioned to us before that he and Mr. Harless are close personal friends. Yet there we were in Austin trying to make this connection.) 

Mr. Harless was not expected in his office until 1:00, but we spoke to two of his staffers. I handed the flyers to Mr. Lance, introduced myself and the kids noting that Isaac had PANS, and invited him to come down the hallway to hear the testimonials. Isaac was taken by an old-time Klein fire truck model, while Gillian gave Mr. Lance a fist bump and asked if we could take selfies. Kids know how to keep it real.

We continued to knock on a few other doors, speaking mostly to staff members and then made our way back to our meeting room. Maybe because of my charm, but more likely due to my children or the connection I mentioned between Mr. Harless and my neighbor, when we got back to room E2 010, Mr. Lance was there. I was deeply honored that he came, and even more impressed afterward to find that he had taken notes and had some follow-up questions. He even shared with me that Mr. Harless is chair of the Select Committee on Health Care Reform. Noted.

A few points of interest:

• There is a Texas PANS Advisory Council (PANSAC) that meets quarterly, hosted by the Texas Department of Health and Human Services and made up of clinicians and state representatives. It was formed in 2021, and Isaac’s doctor, Paula Kruppstadt, is on the council. 
• The administrator and liaison to PANSAC was present on Monday (as was another physician and council member). She read a proclamation by the governor declaring October 9 PANS Awareness Day in the state of Texas.
• The proclamation and one-minute family testimonials were filmed, with permission. You can view them here on Facebook. Gillian’s testimony begins at 7:30 and mine follows immediately after hers, though I recommend listening to them all for a fuller picture of the difficulties PANS/PANDAS families face.

One mom of a teen spoke after the filming stopped at her daughter’s request, because she does not want anyone to know about her diagnosis. Many PANS/PANDAS kids are traumatized by their symptoms and feel shame, embarrassment, and stigma. In fact, when I was first considering writing about Isaac’s diagnosis and our experience with PANS, I asked another PANS mom—a pivotal early contact for me after we received Isaac’s diagnosis—why there wasn’t more press about PANS. Her response: it’s because it is so traumatic to the kids that parents shy away from telling their stories. And I get that. Truly. 

Even now, I pick and choose what I feel I can tell and still do the right thing by my son. But I also feel a sense of urgency to do the right thing by this community and get our stories out there, because people need to know how deeply these kids and families are suffering. And in some way, I believe our stories are our biggest asset, the most compelling thing we have to offer in raising awareness and changing the landscape for this diagnosis.  

The time passed quickly on Monday, but it was definitely time well spent. I wouldn’t know how to engage in this type of advocacy work without a group like this. I have often felt isolated as a mother, but I related in some way to every story that was told. I only regret that I didn’t have more time to connect and exchange information with more of the other families, but I trust that will happen in time. 

PANS Awareness Day 2023 is in the books. I can’t thank you all enough for the many ways you’ve shared the information I’ve been putting out over the past couple of weeks. I’ve had friends reach out to their schools and tag me in emails, friends who posted in support of PANS Awareness on their timelines, even as they are advocating for their own kids with other disabilities, and countless likes, comments, questions, and shares. This is how we will get the word out and make a difference.

I will continue posting about PANS, though not as frequently as I have been during the website launch and buildup to PANS Awareness Day. I will also be writing more broadly about what it’s like to have a child with rare and little-known diagnoses and the support families like ours need. Please continue to read and share and help make the world a better, more informed, and kinder place. You are modeling what it means to be a supportive community, and I am deeply grateful.