Christina SanInocencio

A Chicago Pope implies the existence of an MLA Pope and APA Pope

The Public Broadcasting Act of 1967 created the Corporation for Public Broadcasting. I reread it today; nothing in the law allows a president to defund PBS and NPR. In fact, Congress specifically sought to insulate public media from political pressure.

On a day like this, it’s important to say THANK YOU to all the science and public health communicators for all you do. Your work will be even more critical in the coming years. Keep going! You are very much needed and appreciated. ❤️

Very exciting when the director of #NINDS comes to your meeting. Thanks Dr. Koroshetz, you made our day! @rareepilepsy.bsky.social

About to kick off our annual #rareepilepsy workshop at #AES! #rareepilepsynetwork

Child sitting with head in arms with text overlay: "Siblings of children with epilepsy can experience trauma. Pediatric Epilepsy Surgery Alliance. epilepsysurgeryalliance.org"

It's Epilepsy Awareness Month, and there is no better time to remind you that this journey can severely impact siblings of children with epilepsy. Watch here: ow.ly/PHp850U2yo6

#epilepsy #epilepsyawareness #NEAM2024 #EpilepsyAwarenessMonth #PESAlliance #NeuroSky
#PatientAdvocacy

4) While I wasn't directly involved in this, the FIRST NATIONAL PLAN for the epilepsies was introduced to the house and senate this week. Big shout out to all that made this happen. FWIW, epilepsy is the only major neurological disorder that doesn't have a national plan. HUGE WIN for the epilepsies

3) Attended the #NCA (National Communication Conference) this week for the first time. Lots of great #healthcommunication and #qualitative scholarship. Plan to apply what I learned to my teaching and research in #rareepilepsy (always!)

2) Got official notice on the publication of #Cambridge Elements on #SCN2A! It's sort of like an encylopedia on SCN2A-related disoders that I had the BIG honor and priveledge of co-authoring. Read it here: www.scn2a.org/pdf/scn2arel...

It's been a busy and hugely productive week. Here are some highlights. Really proud and excited.
1) Co-led a #FDA listening session on the DEEs (Developmental and Epileptic Encephalopathies) where the patient voice was front and center. This was the first time the FDA accepted a DEE panel.

✨ Big News! ✨
Seize the Moment. Move Mountains for SCN2A!
We’re thrilled to announce that our 7th Family & Professional Conference is coming to Denver, Colorado on July 31-Aug 2, 2025! More details coming soon! 💙💚💜
#SCN2A #cureSCN2A #genetics #geneticeilepsy #autism #epilepsy

#healthcommunication announcements from the #NCA health communication division (3/3). Health communication research opportunities through #NIH

#healthcommunication announcements from the #NCA health communication division (2/3). A new health story hub for shared resources of #healthcommunication stories, syllabi, and teaching materials from #universityofiowa

#healthcommunication announcements from the #NCA health communication division (1/3). CPM dissertation fellowship opportunity that I wish I knew about when I was writing my diss on #LGS and privacy sharing!

Big news for the epilepsy community. A bill has been introduced in the Senate (S.5353) and House (# TBD) to create A National Plan for Epilepsy. Learn more - www.epilepsy-national-plan.org
@rareepilepsy.bsky.social

Yay!!!

Very cool opportunity from the #Epilepsy Foundation. They are launching a Research Ambassador Program to strengthen connections between the epilepsy community and research, providing insight into the processes of clinical research and new therapy development. www.epilepsy.com/research-fun...

Disabled People Transforming Media Culture for a More Inclusive World This book tells the stories of disabled people who have been influential in creating modern mass media.  Through the voices of key disabled media makers and

Check this one out... Disabled people transforming media from Beth Haller. It's open access too. www.taylorfrancis.com/books/oa-mon...

There are nearly 1,000 genes known to cause epilepsy. 800+ of them are associated with developmental and epileptic encephalopathy. #rareepilepsy #epilepsy #genetics

We have these at Fairfield University and they are mostly sidewalk obstructions that die in between deliveries because someone forgot to charge them 🤣

Excited to see so many new followers by colleagues and friends in epilepsy, health communication, rare disease, academia, medicine, and more.

A great way to follow a bunch of epilepsy researchers all at once.

Love this. Thank you so much.

Q: What happens when you overpay for a social media platform, drive away most of your advertisers, alienate half its users, making it worth less than a third of what you paid for it within a year?

A: You get put in charge of government efficiency.

Health communication researcher here 👋

a woman standing in a library with a book titled room on the shelf ALT: a woman standing in a library with a book titled room on the shelf

Librarians moving dystopian novels to the nonfiction shelves.

A roadmap to cure CHD2-related disorders - Stephanie Prince, Emily Bonkowski, Christopher McGraw, Christina SanInocencio, Heather C Mefford, Gemma Carvill, Brian Broadbent, 2024 Coalition to Cure CHD2 (CCC) is a patient advocacy group dedicated to improving the lives of those affected by CHD2-related disorders (CHD2-RD) by increasing ed...

And last month, "A roadmap to Cure CHD2-related disorders" journals.sagepub.com/doi/full/10.... was published in Therapeutic Advances in Rare Disease #rareepilepsy #autism #patientadvocacy @curechd2.bsky.social

Sage Journals: Discover world-class research Subscription and open access journals from Sage, the world's leading independent academic publisher.

Hot off the press. New article, "Charting the Course to a Cure for #SCN2A related disorders" was just published today in Therapeutic Advances in Rare Disease. journals.sagepub.com/doi/10.1177/.... #rareepilepsy #autism #patientadvocacy

@curechd2.bsky.social is now on bluesky! CHD2 is a rare neurodevelopmental disorder associated with epilepsy, autism, and intellectual disability.

New to Bluesky. Happy to be here and hoping to connect with rare epilepsy researchers, caregivers, and patients, health communication researchers and practitioners, media studies folks, social scientists, and qualitative researchers.