CharBearKeepsDancing

A bilingual book for families and advocates for Infantile Spasms

[Pediatric Epilepsy Surgery Alliance @PESAlliance]

Your families need help navigating the maze of resources available to them. That's why we have our Almost Everything List. 150+ pages of almost everything!

https://t.co/EtGVEjOw4l

[Hope for HIE ☀️ @HopeforHIE]

Roughly 1/3 of #CerebralPalsy is genetic. #Etiology matters!

https://t.co/VHPjS7Hhbx

#NeoTwitter #NeuroTwitter

[Pediatric Epilepsy Surgery Alliance @PESAlliance]

✅ 88 participants
✅ 69% show positive response to treatment with thalamic stimulation (RNS or DBS)

No significant 🔗between treatment response and age, target area, modality, or laterality.

📊 We need more data!

#epilepsy #neurmodulation

[Juan F. Cabello @jf_cabello]

Orgullosos de este programa de intercambio que ya cumple 18 años. https://t.co/uTckl6tT6U

[DEE-P Connections @DEE_Pconnection]

What Does Better Look Like? Our Inchstone Project
partnered with @FamilieSCN2A to ask what meaningful changes demonstrate improved quality of life & to document what matters to those with severe DEEs and their families. https://t.co/loedzwCvXq
Thanks to the #SCN2A families!

[Christina Briscoe Abath @BriscoeAbath]

Infantile spasms are often easy to miss! Check out our learning module for primary care providers on how to recognize them, triage, and care inequities. https://t.co/y4f0lIid0f (free) #ISAW2023 #infantilespasms

@OPENPediatrics @BostonChildrens

[TalkAboutIt.org @TalkAboutItorg]

Another reason to love Philly! #EpilepsyAwarenessMonth

[Hope for HIE ☀️ @HopeforHIE]

The Power of Community:

➡️ #NICU social worker reaches out to ask for resources in Haitian Creole.
➡️ Within 3 hours of our #SocialWorker asking if we have a parent who can help, we have a volunteer to help translate our materials & speak to the family.
➡️ New resource created for more families.

☀️🧠🎉🌎

Need to refer a patient-family? Need specific resources? Reach out at https://t.co/8IpClzumkj!

#NeoTwitter #NeuroTwitter #PatientAdvocacy

[CharBearKeepsDancing @CharBearDancing]

Do you have name suggestions? We are thinking Waves, the Brave Buddy Bear. This is the mock up!

This is a parent-driven initiative to create an EEG buddy. We hope they will make the tests a little less scary. ❤️❤️❤️
https://t.co/bqKq0j3z4q

[Pediatric Epilepsy Surgery Alliance @PESAlliance]

Stuck in an office space without enough flair? Swing by our booth at #CNSAM and grab our free buttons! Help raise awareness with your colleagues about #epilepsysurgery.

https://t.co/Ls0oOLw2DN

[Jessica Solomon Sanders, MD @doctordobro_]

Important work by ⁦@JordanJanaeCole⁩ highlighting the inequities of access to genetic testing for children with #NDD. Helping us understand why, to pave the way for next steps. ⁦@ChildrensColo⁩ ⁦@ChildNeuroSoc⁩ ⁦@CUAnschutz⁩ #CNSAM

[Stéphane Auvin @stephane_auvin]

Levetiracetam vs Lamotrigine as First-Line Antiseizure Medication in Female Patients With Idiopathic Generalized Epilepsy: a different effect in JME between the 2 ASM while no difference for JAE and EwGTCA ⁦@JAMANeuro⁩ https://t.co/2E6vvSQzEZ

[Pediatric Epilepsy Surgery Alliance @PESAlliance]

< 10% of pediatric #epilepsysurgery cases in U.S. are performed on #Latino children. We're breaking down this disparity with our new video series Charlemos Sobre Cirugía Para Epilepsia.

TY @AndreaVAndrade1 for joining us and @livanova for your support

🎥https://t.co/AznljL63eZ

[Juan F. Cabello @jf_cabello]

@MinDesarrollo @ximenaguilera @INTA_UChile @sopniachile @sochipe Estamos confiados que nuestros representantes sabrán defender la #pesquisaneonatal como una prioridad en la discusión parlamentaria del #Presupuesto2024 @DrLagomarsino @ANDRESCELISM @KarolCariola @HeliaMolina_M @AnaMariaGazmuri @agustinromerole @chahuan @DoctorJLCastro

[Juan F. Cabello @jf_cabello]

El @MinDesarrollo publica una "recomendación favorable" de la ampliación del Programa de Pesquisa neonatal de 2 a 26 condiciones. Esperemos que pueda estar incluido en el #Presupuesto2024 @ximenaguilera @INTA_UChile @sopniachile @sochipe
https://t.co/IUvTraTjtz

[Pediatric Epilepsy Surgery Alliance @PESAlliance]

📣 A generous donor and dad in our community has committed to match up to $10,000 in donations to our Give for Hope™ campaign to help get more kids to #epilepsysurgery evaluation without the financial barriers of travel costs.

Give the gift of hope here: https://t.co/QSxv5jnpTZ

[CharBearKeepsDancing @CharBearDancing]

Our website is open for preorders in English!! https://t.co/qHSC5LoHlZ

Spanish and French will be available in the next week!

Did you know that Eloísa was the first woman physician practicing in South America (Chile)? #WomenInMedicine

Follow us on IG!

[Mickie's Miracles @mickiesmiracles]

Are you feeling lost and overwhelmed, not knowing where to turn as your infant or child suffers from seizures? You're not alone. At Mickie's Miracles, we're here to guide you every step of the way. We believe no parent should navigate the complex world of epilepsy alone.

[Epilepsia @EpilepsiaJourn]

Interictal High-Frequency Oscillations, #Spikes, and Connectivity Profiles: a Fingerprint of Epileptogenic Brain Pathologies
https://t.co/MVKOOUJgUw

#hippocampalsclerosis #focalcorticaldysplasia #gliosis #highfrequencyoscillations #epilepsy #ILAE @IlaeWeb @WileyNeuro

[Alissa D’Gama @alissadgama]

Thrilled to share our paper in @TheLancetNeuro demonstrating the feasibility, diagnostic yield, and clinical utility of rapid genome sequencing in infantile epilepsy, with many thanks to the families who participated https://t.co/gMkgWogaAE