Patient advocacy is a BIG part of our mission...and today's post is a very exciting advocacy effort that has been in process for over a year! We are so thankful to Dr. Zeynep Tümer who presented to the CDC this morning on behalf of all SHINE patients for an ICD-10 code.

Middle schoolers are still kids at heart! My students are enjoying painting signposts from their independent reading novels. It’s a little messy in room 460 today. 🖼️ 📚

It's been almost a year since we launched our documentary, made possible through the #Rareis grant program from Horizon Therapeutics. If you haven't seen it, please check out the documentary on our YouTube channel: youtu.be/3_tbFynXM2s?fe… #ESES #seizures #DEE #advocacy

Another stroller half marathon with my favorite running buddy! We raised more awareness for @SHINESyndrome (and ran a stroller half pretty darn quickly!) Queen Bee Half #strollerhalf #DLG4

My students did a great job demonstrating creativity with blackout poetry using key pages from NealShusterman’s “The Shadow Club!” #ELA #8thgrade

This has always been a favorite assembly for me as a teacher, but knowing there was a sensory-friendly performance is just 🥰🥰. Thanks for including my cutie!

Don’t miss the November 10th deadline to confirm that you get one of our dry-fit t-shirts! Also notice when registering that we have girl and guy shirts. Please retweet and share on your social media to help us let everyone know!

EEG day. 🧠💜

Dear Santa, All we want is a cure. Thank you! An estimated 65 million people with #epilepsy worldwide. #EpilepsyAwareness #HappyHolidays

Another round of ketamine for my sweet boy. #epilepsy #raredisease #DLG4 #ESES

One of the few good things about #raredisease life are the relationships built with other families! I’m so honored to be one of the first to try Rare Brew Coffee. Thank you, Sydney Stelmaszek and Brett @ UFD Tech. Use code SRF10 if you order. 🦓 rarebrewcoffee.com

A perfect day for some creativity: solar eclipse blackout poetry! 🌖

This class of incoming 9th-graders at Mason City Schools is top-notch. I am going to miss them so much. 💚

Great days for comets at the regional, boys first place and girls second place, next stop, the state championship next saturday, Go Comets!