Top Tweets for #thisisscn8a
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
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
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
Whatโs one thing you wish the world knew about #SCN8A? ๐ค
๐Families, your perspectives are key to spreading awareness. ๐๏ธ
https://t.co/idaiCbiY30
๐Professionals, please use this link to answer the variant question.
https://t.co/G01Uwy8khv
#SCN8A #SCN8AAwareness #ThisIsSCN8A
๐ Launching our new Wednesday 'What is SCN8A?' ๐งฌ series! Among the less than 1,000 diagnosed with #SCN8A worldwide, many more are undiagnosed - estimates are 1 in 56,000. Join us in spreading #SCN8Aawareness. Learn more at https://t.co/uRyARc2Af2 ๐งฌ#ThisIsSCN8A
Check out all these beautiful #SCN8Asuperheroes.
Learn more about them and the work we do here: https://t.co/TRyRi4N3cX
#ThisIsSCN8A #CureSCN8A #SCN8Aawareness
#SCN8A is not just 1 disorder. There are at least 5 forms of SCN8A. Seizures are not the main issue for many - anxiety, GI, behaviors, respiratory, motor challenges, pain. Follow, share, donate, volunteer. https://t.co/BflU5Oo0re #ThisIsSCN8A #NEAM2023 #collaboratingforacure
#SCN8A is not just 1 disorder. There are at least 5 forms of SCN8A. Seizures are not the main issue for many - anxiety, GI, behaviors, respiratory, motor challenges, pain. Follow, share, donate, volunteer. https://t.co/BflU5Oo0re #ThisIsSCN8A #NEAM2023 #collaboratingforacure
SCN8A is critical to the functioning of the brain and mutations wreak havoc on our children. Please help us spread awareness and find better answers for those with SCN8A. #collaborateforacure.
#ThisIsSCN8A #scn8aawareness #NEAM2023 #epilepsyawareness https://t.co/7xYRcSfSFb
Huge shout out to @TheNotoriousEEG for all you do! Thanks for being our fearless leader as we work to develop the first ever #global diagnosis and #treatment guidelines for #SCN8A AND enrolling patient #1 for the first ever 8A #clinicaltrials! #progress #ThisIsSCN8A
On this #RareDiseaseDay2022, weโre highlighting work done at Cook Childrenโs for many rare forms of #epilepsy in hopes of finding cures for kids like Carter! ๐ https://t.co/1unuyjTLJJ
Tomorrow is SCN8A Awareness Day! If you know someone living with this disorder, share your story tomorrow with the hashtag #ThisIsSCN8A!
Feb 9th is International #SCN8A Awareness day. For Elliott, #SCN8A means still working on head control at 9 years old. He works so hard and has made incredible progress. #thisisSCN8A @SCN8AAlliance #counteveryinchstone
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