A week ago yesterday, I took a day trip to the Texas State Capitol in Austin where I served on a panel of parents and practitioners for the second annual awareness event organized by Texas Pandas/Pans Advocacy & Awareness. It was a small group, but close to double in size from last year, made up of families living with PANS/PANDAS and medical providers who are on the front lines of treatment.
The day kicked off with a proclamation of October 9 as PANS/PANDAS Awareness Day in the state of Texas. There is much work to do, but Texas does have a PANS Advisory Council, made up of physicians and other medical providers/social workers with one or two legislators and administrators. Their purpose is to “to advise Health and Human Services Commission and the legislature on research, diagnosis, treatment and education related to pediatric acute-onset neuropsychiatric syndrome.”
Testimonials
Attendees were invited to share one to two minute family testimonials about their child’s diagnosis and life with PANS, and some kids even addressed the group themselves. I spoke to how long it took us to get a diagnosis for Isaac (7 years) and the fact that PANS impacts both kids who are otherwise neurotypical and those who have other underlying diagnoses.
Several parents noted visiting multiple doctors before proper diagnosis and lamented their kids losing much of their childhoods to PANS/PANDAS. One said it took eight doctors, six therapists, and tens of thousands of dollars. Another said it was the 22nd doctor who diagnosed her daughter—a relatively new ENT who recognized her tonsils were swollen and suggested it might be PANS/PANDAS.
Here are a few quotes that I found especially poignant:
One of the youth who spoke talked about “the differences between me and this thing that I have.”
A father whose story was especially devastating said of his son, “It was like he was possessed. Something took him over. He had the pupils for it and everything.”
Another talked about how PANS/PANDAS “robs you of your role” as a parent. “You suffer the total devastation of what you thought your life was going to be, through no fault of the child, through no fault of the family.”
Book project update
Following family testimonials, I had the opportunity to introduce the PANS/PANDAS book project to a very receptive audience. As I’ve mentioned before, PANS/PANDAS families are often overwhelmed with the financial burden of treatment for their kids, so I was doing more information-sharing than fundraising. That said, I did have a beautiful awareness-themed bracelet stack handmade by a friend that I raffled to anyone who chose to donate, which several families did, and I was delighted that one of the girls who had shared her story won.
As of today, I’m happy to report that we have raised $9,350 for the PANS/PANDAS book project in partnership with MSU School of Journalism and Front Edge Publishing. Our total goal is $15,000, so there is work still to do, but we are in a strong financial position to begin the project as scheduled in January 2025. I will continue to post updates here, and of course, you are welcome to donate at any time through our GiveButter campaign.
Sincere thanks to my dear friend and fellow PANS mom, Susan, who made the trip to Austin with me, and to all who have supported this project in the days leading up to PANS/PANDAS Awareness Day. Together, we will make PANS/PANDAS a household name!
Gray Colored Glasses 
One response to “Raising Awareness at the Texas Capitol”
October 9th is Hondo’s Birthday! So that’s fun! I need to get him a PANS/ PANDAS bandana to wear every year on his BD.
Ann, I have so much love for you. You are doing an amazing job. Keep it up! You are making a difference in the lives of people who NEED to be seen, known, heard. You are awesome.
xoxo Ginny
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