Top Tweets for #SCN8AStrong
๐ Day 1 of the SCN8A Research Roadmap workshop at MIT in Cambridge, MA is off to an incredible start!ย
#SCN8A #SCN8AResearchRoadmap #scn8aawareness #scn8astrong #thisisscn8a #collaboratingforacure #curescn8a #epilepsyawareness
SCN8A Gain of Function
Optimal first-line medications for treating #SCN8A GOF variants based on global consensus are Oxcarbazepine and Carbamazepine. Exercise caution with Levetiracetam.
For more information, visit https://t.co/SKHLIbS5vC
#scn8aawareness #ndds #scn8astrong
๐ธ Meet Lisa, a Remarkable SCN8A Mom ๐ธ
"Being an #SCN8A mom...means having your heart flooded with so much love and amazement for your child every day, seeing all the things that they do accomplish while they are running the race of their life."
#SCN8AAwareness #SCN8AStrong
๐Meet McKenzie, our #SCN8ASuperhero๐
Despite her size, her spirit is larger than life! ๐ช McKenzie competed in the Special Olympics, ๐
showing true determination. Let's cheer her on and celebrate her achievement! ๐ Go McKenzie! #SCN8A #SpecialOlympics #SCN8AStrong๐
Don't miss late-breaking information on caring for those with #SCN8A. The International SCN8A Alliance will present the FIRST-EVER global Consensus on the Diagnosis & Treatment of SCN8A-related disordersย
April 7th - Register:https://t.co/OMWATMuhjM
ย #scn8aawareness #scn8astrong
An #SCN8A diagnosis requires genetic testing via an epilepsy gene panel, exome sequencing, or a whole genome sequencing. Many, maybe most, people with SCN8A have yet to be diagnosed. Visit https://t.co/BflU5Oo0re to learn more. #SCN8Afact #SCN8Aawareness #SCN8AStrong #thisisscn8a
๐ขDon't miss the launch of the FIRST-EVER Global Consensus on the Diagnosis and Treatment of SCN8A, a historic milestone for the SCN8A community.
Sunday April 7th at 4 PM EST | 1 PM PDT | 10 PM CET | 7 AM AEST (+1) https://t.co/qX1YLQuWtL
#SCN8AAwareness #SCN8AStrong #CureSCN8A
๐ Meet Mauro from Mexico, a joyful 5-year-old #SCN8ASuperhero battling #SCN8A. His journey began with his first seizure at 10 months. A year later - recurrent seizures & hospital stays. Despite these challenges, the search for the right meds continued.๐ฅ#scn8astrong #thisisscn8a
๐ Missed our International SCN8A Awareness Day online event? We've got you covered!ย
๐ Catch up here - https://t.co/r2KKVOjH0C
If you want to join us in advancing SCN8A research, you can help as we are #CollaboratingForaCure #SCN8A #SCN8AAwareness #SCN8AStrong
We remember Everleigh, a beautiful #SCN8ASuperhero who showed immense bravery. Her mom, Chelsea, says, in her 13 months "She surpassed all their expectations." Though she's no longer with us, her warrior spirit fights on in our advocacy. ๐ #SCN8AAwareness #SCN8AStrong #SCN8A
Xavier from Victoria is our #SCN8ASuperhero and resident horse whisperer ๐ด. At 17, he competes in horse riding, facing life with SCN8A like a champion -ย tackling every challenge head-on. ๐ Share Xavier's & tell your #SCN8A story here /bit.ly/scn8aq #SCN8AAwareness #SCN8AStrong
๐ Gather Together for SCN8A: A Call to Action ๐
1 DAY LEFT - Join us this Friday, Feb 9th, 3PM EST for a live International SCN8A Awareness Day event. Partners, doctors, researchers, and surprises await! Register now: https://t.co/1yFRGxnmFB #SCN8A @SCN8AAwareness #SCN8AStrong
Shoutout to Braum, our #SCN8ASuperhero from Dayton, OH! ๐ Facing challenges with a brave heart, he still finds time to rescue animals & keep everyone laughing. Plus, he's a horror game creator in the making! #SCN8AAwareness #SCN8AStrong
#SCN8A Visit us at https://t.co/BflU5Oo0re
Meet #SCN8ASuperhero Ksawier from Poland! ๐ His love for life? Unstoppable! His mom's words: "when he smiles, all the heavy past becomes insignificant."ย
๐ You can share your story here too: https://t.co/oBqlX8o2y2
๐ชโค๏ธ #SCN8AAwareness #SCN8AStrong #SCN8ASuperhero
Meet Sadie, our #SCN8ASuperhero of the week! ๐ซCelebrating 4+ years of seizure freedom with Oxcarbazepine ๐ after struggling on Keppra. Sheโs walking and running, both things her family was told by doctors might never happen. Way to go Sadie! #SCN8AAwareness #SCN8AStrong #SCN8A
Meet Sadie, our #SCN8ASuperhero of the week! ๐ซCelebrating 4+ years of seizure freedom with Oxcarbazepine ๐ after struggling on Keppra. Sheโs walking and running, both things her family was told by doctors might never happen. Way to go Sadie! #SCN8AAwareness #SCN8AStrong #SCN8A
The power of connecting to the International SCN8A Alliance has been foundational to Zipporah's understanding of SCN8A. The information empowered her to fight this terrible disorder and effectively advocate for her son Moziah. Hear her powerful story.
#scn8a #scn8astrong
๐ Meet Ryli: Our #SCN8A Superhero๐ | Ryliโs life is filled with the joy of music and the wonder of car rides. Despite the her challenges.
๐End-of-Year donations fund vital research for children like Ryli
https://t.co/KjNc3OfwH4
#scn8a #scn8astrong #collaboratingforacure
We're tackling #SCN8A challenges - our 2024 Research Roadmap will set clear, prioritized actions to improve lives & treatments. Every step gets us closer to a cure. Your support turns plans into reality! #SCN8AStrongย
๐End-of-Year $30K Matching Gift
๐https://t.co/KjNc3OfwH4
๐
๐ฆ Merry Christmas from all of us at the International SCN8A Alliance! Wishing you a holiday full of laughter, love, and cherished moments. โ๏ธโ๏ธ
#scn8a #scn8astrong #collaboratingforacure
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