SMC1A Foundation

X-linked variants in the #SMC1A gene cause developmental and epileptic disorder.

[SMC1A Foundation @cure_smc1a]

⏳ One week left!

Our Back-to-School Giveaway closes on August 3rd, marking the final stretch.

🎟️ Enter to win: https://t.co/ftqmE2WTJz

#backtoschool #epilepsy

[SMC1A Foundation @cure_smc1a]

⏳ 3 WEEKS LEFT — Our Back-to-School Giveaway ends August 3rd!

Here's how you can help:
🎟️ Grab your tickets today
📣 Spread the word — share with family, friends, coworkers, and your networks
🏆 Win while giving

👉 Enter here: https://t.co/ftqmE2WTJz

#Epilepsy #BackToSchool

[Epilepsy Research Institute @EpilepsyInst]

A big thank you to our Chief Scientific Officer, Professor Finbar O’Callaghan, for stepping in to deliver today’s keynote on the journey of fenfluramine from the lab to the bedside, and its role in the treatment of people with epilepsy.
#SoWhatResearchSummit #Onein100

[Epilepsy Foundation of America @EpilepsyFdn]

Today is Give Something Away Day! Giving comes in many forms. Whether you donate, participate in a fundraiser, or share epilepsy awareness resources with your community, your support helps ensure no one faces epilepsy alone. https://t.co/4n43rBB0t7

[SMC1A Foundation @cure_smc1a]

An RT would be much appreciated to help us raise funds for research into this rare disease #SMC1A-related epilepsy disorder! 🙏 ❤️

@BrainAblaze @CureEpilepsy @EpilepsyFdn @epilepsysociety @RareEpilepsy @RareDiseases @epilepsyaction @EpilepsyWar @seizuresalad

[SMC1A Foundation @cure_smc1a]

⏳ 3 WEEKS LEFT — Our Back-to-School Giveaway ends August 3rd!

Here's how you can help:
🎟️ Grab your tickets today
📣 Spread the word — share with family, friends, coworkers, and your networks
🏆 Win while giving

👉 Enter here: https://t.co/ftqmE2WTJz

#Epilepsy #BackToSchool

[SMC1A Foundation @cure_smc1a]

Behind every ticket is a family holding onto hope. Don't wait — August 3rd will be here before you know it.

👉 Enter here: https://t.co/ftqmE2WlU1

[SMC1A Foundation @cure_smc1a]

🎆 Happy 4th of July from the #SMC1A community! 🇺🇸

Wishing you all a joyful, safe, and meaningful day filled with connection, hope, and a little bit of sparkle. 🎇

💫 Visit our website for more information: https://t.co/DUtpgEP7vH

#RareDiseaseAwareness #epilepsy

[SMC1A Foundation @cure_smc1a]

@RareDiseases Student advocates play a powerful role in raising awareness for rare diseases like SMC1A-DEE. Sharing with our community — hope to see future chapters championing the rarest of the rare. #SMC1A #Epilepsy

[SMC1A Foundation @cure_smc1a]

If you're a student (or know one!) passionate about making a difference, this session on July 7 is worth your time. 🩷

Visit our website for the latest research on SMC1A-DEE: https://t.co/DUtpgEOzG9

#SMC1A #RareDisease #StudentsforRare

[National Organization for Rare Disorders (NORD) @RareDiseases]

🎓 Students! Are you interested in starting a NORD #StudentsForRare® chapter on your campus?

Join us Tuesday, July 7, at 6 p.m. ET to learn how these chapters help raise awareness of #RareDiseases, educate peers, and advocate for the #RareDisease community.

RSVP here: https://t.co/JApuo4nPHO

#StudentLeadership

[SMC1A Foundation @cure_smc1a]

@John_milne0147 Thank you, John! Much appreciated 😊

[SMC1A Foundation @cure_smc1a]

☀️ Summer is just around the corner!

For many children with #SMC1A and #epilepsy, a little extra planning can help keep things safe, cool, and comfortable during warmer days.

🩷 Does your SMC1A Sunshine Sister have a favourite summer activity? Any tips?

#EpilepsyAwareness

[SMC1A Foundation @cure_smc1a]

@defeatepilepsy Congratulations! 🤗

[Brain Ablaze @BrainAblaze]

Before posting that video of the July 4th fireworks tomorrow, please consider that flashing videos can be a seizure trigger for about 3-5% of people with #epilepsy who are photosensitive. A warning at the top of the post goes a long way! #EpilepsyAwareness

[SMC1A Foundation @cure_smc1a]

Let’s celebrate all our #SMC1A kiddos born in July! 🎆🎉

Drop a 🎂 or share your July baby’s name in the comments. Let’s celebrate them together! 🎇

Visit our website for more information: https://t.co/DUtpgEOzG9

#SMC1AFoundation #RareDisease #JulyBirthdays #Epilepsy

[SMC1A Foundation @cure_smc1a]

Let's celebrate all our #SMC1A kiddos born in June! 🌻🎉 June is a time of warmth, long days, and a community full of love. ☀️

Drop a 🎂 or put your June baby’s name in the comments.💛

Learn more: https://t.co/YB9gRVH5Px

#SMC1AFoundation #RareDisease #Epilepsy

[SMC1A Foundation @cure_smc1a]

To every mother navigating the extraordinary path of #SMC1A — we see you. The work you do, often quietly and without recognition, holds everything together in ways that truly count 🌷

#MothersDay #RareMom #EpilepsyParent

[Brain Ablaze @BrainAblaze]

Happy #NationalNursesDay to the incredible professionals who stand on the front lines of care! From the emergency room, EMU, or the clinic, your dedication to those living with #epilepsy provides us hope. #NursesDay #EpilepsyAwareness

[MyEpilepsyTeam @MyEpilepsyTeam]

For individuals living with epilepsy, taking daily anti-seizure medication is essential — but it can also be a struggle. Explore 6 tips to help establish a routine: https://t.co/IBFRx9RDaC

[EURORDIS-Rare Diseases Europe @eurordis]

🧠 This week is #EuropeanMentalHealthWeek

For people living with rare diseases, mental health is often overlooked despite its major impact.

🔗 Learn more about the challenges facing our community: https://t.co/ldjGId7D88