CACNA1A Foundation

@cacna1a

Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.

cacna1a.org Joined April 2020

2.2K Following 1.6K Followers 613 Posts

Latest posts 5

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CACNA1A Foundation @cacna1a Jul 18, 2024

Our 3rd #CACNA1A Research Roundtable is a wrap! The closing message: We each have a critical role to play whether you’re a researcher, clinician or impacted family. So look at the gaps and open questions we’ve discussed today, and figure out what you can do to help address them.

CACNA1A Foundation @cacna1a Jan 30, 2025

Rare groups: worth checking out this easy-to-create-with-AI resource for your communities ⬇️

Dennis Lal @LalDennis Jan 29, 2025

📢 Pre-print alert! 🤖 Rare Disease AI Podcast 🎙️

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Our team around @EdoPerezP explored how AI-driven podcasts could transform rare disease education, making research accessible, multilingual & digestible for patients, caregivers & non-specialist clinicians ➡️

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CACNA1A Foundation @cacna1a Dec 6, 2024

Our team is at #AES2024 — check out Booth N2152 in the advocacy section and listen to our poster presentation with @combined_brain @ODC_UPenn “A Disease Concept Model for #CACNA1A Neurodevelopmental Disorders” on Dec 8th 12-2pm. Abstract #2.048 @lbhmana

American Epilepsy Society @AmEpilepsySoc Dec 5, 2024

Welcome to #AES2024! 🎉 We're excited to kick off this year's annual meeting. Let's make it a great one! THIS is where you belong.

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CACNA1A Foundation @cacna1a Nov 27, 2024

We’re proud to share that our Director of Science Engagement, Dr. Pangkong Fox, will be among the speakers at this year’s World Orphan Drug Congress USA, April 22–24. Free passes are available for fellow patient advocates. Details below ⬇️

World Orphan Drug Congress USA Verified account @OrphanConf Nov 20, 2024

Meet the inspiring women shaping the future of #patientadvocacy at #WorldOrphanUSA 2025!❤️‍🩹 We’re honored to welcome speakers from organizations empowering patients & driving transformative change in the #raredisease community.

Join them! Book & save now: terrapinn.com/bookwodc_tw

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CACNA1A Foundation @cacna1a Oct 25, 2024

Calling all lawyers this #ProBonoWeek: join @WeTheAction to volunteer with #RareDisease orgs doing life-changing work on behalf of their patient communities. They need your legal expertise to navigate collaborations with academia, industry and contractors.

We The Action @WeTheAction Oct 25, 2024

Since our partnership with @ChanZuckerberg launched in February, 70 We The Action volunteers have provided legal support to 23 patient-led rare disease organizations like @CACNA1A.

Celebrate #ProBonoWeek by signing up for a #RareAsOne Network project ⤵️
wetheaction.org/RareAsOneNetwo…

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