From an anonymous PANS mom…. The details of our story are important, and yet not necessarily unique. There are too many families whose stories share the same refrain…just slightly different verses to the same song. After too many long, painful years suffering in silence, and medical and psychological professionals unable
I’m learning. I’m learning about marketing and advertising. I’m learning about how to say things as a “we” and not as an “I”. I’m learning that being open on my own personal social media platforms about my ideas about religion or my kids health, or my political affiliation can actually
We could really use your support. If you’re unfamiliar with who we are, PRAI stands for Pediatric Research and Advocacy Initiative. You might recognize us from our work in North Carolina and Virginia. But after raising $150k in 90 days last year, we made a major shift towards becoming a
Many of us are so incredibly nervous about the 20/20 story tonight on PANDAS. Will they lean into the controversy piece? Will they mention PANS, Lyme and Mast Cell Disease? Will they act as if a 10 day course of penicillin at onset is the ultimate answer and share the
I know we’ve been hounding you. How many Twitter messages and emails have you received from PANDAS parents since last nights episode aired? I can only imagine it’s been quite a few. While I can assure you no one in our community is celebrating knowing you and your daughter have
I’ll give fair warning. This story is a Jesus-y one. Read at your own risk! He is Risen. Those 3 words have popped up on my text strings and FB feed all morning. And I admit, they feel a bit cliche. “He is Risen.” But it’s Easter. I mean, I
My sister has a background in marketing and strategy. She’s been an incredible resource for me when getting PRAI off the ground. I have always been the type to just start something without really spending the time to ask myself where it is that I want to go, so her
When I first had my son 4 years ago I had the same fairytale picture of motherhood that most mother’s do. I pictured the playground, and the park. Watching his first play. The first time he got on the school bus. I never anticipated the food intolerances. The frequent infections.