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Christina SanInocencio

@csaninocencio.bsky.social

1.2K followers 1.2K following 25 posts

Qualitative health communication researcher with a focus on rare epilepsy. Assistant Professor of Communication. LGS sibling. Founder, LGS Foundation; Board, Coalition to Cure CHD2; Advisor, FamilieSCN2A; Chair, Rare Epilepsy Network. LI, NYC & CT

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Reposted by Christina SanInocencio

Hector Diaz @iamhectordiaz.com · May 8

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

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Reposted by Christina SanInocencio

Brian Stelter @brianstelter.bsky.social · May 3

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.

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Reposted by Christina SanInocencio

Dr. Lucky Tran @luckytran.com · Feb 13

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. ❤️

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Christina SanInocencio @csaninocencio.bsky.social · Dec 8

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

Christina SanInocencio @csaninocencio.bsky.social · Dec 7

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

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Reposted by Christina SanInocencio

Audrey Vernick @audreyvernick.bsky.social · Nov 23

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

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

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Christina SanInocencio @csaninocencio.bsky.social · Nov 23

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

Christina SanInocencio @csaninocencio.bsky.social · Nov 23

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!)

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Christina SanInocencio @csaninocencio.bsky.social · Nov 23

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...

www.scn2a.org

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Christina SanInocencio @csaninocencio.bsky.social · Nov 23

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.

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Reposted by Christina SanInocencio

FamilieSCN2A Foundation @scn2a.bsky.social · Nov 22

✨ 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

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Christina SanInocencio @csaninocencio.bsky.social · Nov 22

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

Christina SanInocencio @csaninocencio.bsky.social · Nov 22

#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

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Christina SanInocencio @csaninocencio.bsky.social · Nov 22

#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!

Christina SanInocencio @csaninocencio.bsky.social · Nov 22

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

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Christina SanInocencio @csaninocencio.bsky.social · Nov 20

Yay!!!

Christina SanInocencio @csaninocencio.bsky.social · Nov 18

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...

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Christina SanInocencio @csaninocencio.bsky.social · Nov 18

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

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

www.taylorfrancis.com

Christina SanInocencio @csaninocencio.bsky.social · Nov 18

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

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Christina SanInocencio @csaninocencio.bsky.social · Nov 16

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

Christina SanInocencio @csaninocencio.bsky.social · Nov 16

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

Christina SanInocencio @csaninocencio.bsky.social · Nov 15

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

JB Manent @jbmanent.bsky.social · Nov 13

Hey #epilepsy research people doing the great migration from the other side! I've just created this starter pack with a few names that I'll update as I get feedback, so please spread the word so we can build a community!

go.bsky.app/B8pPi1n

Christina SanInocencio @csaninocencio.bsky.social · Nov 15

Love this. Thank you so much.

Reposted by Christina SanInocencio

Just Jack @just-jack-1.bsky.social · Nov 13

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.

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Christina SanInocencio @csaninocencio.bsky.social · Nov 14

Health communication researcher here 👋