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
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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
So tonight my neck is aching. Like, totally aching despite far too much Advil. I feel like I am carrying around 100 pounds of bricks on my back. I’m pretty sure I cried at least 10 times this week under the weight of this disease and the drama that comes
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
For all the PANS & PANDAS families out there suffering from a host of different obscure pathogens, you’ll take 2 of these devices, yes? One for you and another for a friend? Sign us up. https://www.nature.com/articles/nm.3640
This post is a long time coming. Since starting PRAI, I’ve spent a great deal of my time trying to figure out where to focus our attention. The needs of our community are so great. Families are being ravaged by this illness and so many of our marriages are ending
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Keep up with what we're doing at PRAI and learn more about PANS/PANDAS from families in your community.