JR’s book, ORCA & RareX, Data talks, Update Ciitizen, Syndrome Management, ASOs for the Brain, Libby & Espy #S10e89

JR’s book, ORCA & RareX, Data talks, Update Ciitizen, Syndrome Management, ASOs for the Brain, Libby & Espy #S10e89
 
JR WEBINAR - MORE OF EVERYTHING - BOOK
 - Thursday January 17, 2023 - https://syngap.fund/jr
- Direct link: https://us02web.zoom.us/webinar/register/WN_EMzPKDWiRluBMmslT0wpdA 
 
ORCA Progress and Rare-X - Sign up now and if signed up, take the ORCA.
 - Login/Signup for Rare-X https://syngap1.rare-x.org/
 - Take the ORCA
 
Ingo’s CNS talk shows us what is possible with Ciitizen Data, other data.  And how distinct SYNGAP1 is…
Thread https://twitter.com/JMGraglia/status/1612978647107002368
Distinct https://twitter.com/JMGraglia/status/1612978675053658113
SYBGAP1 Poster https://twitter.com/JillianLMcKee/status/1600202742269501442 

 
Update your Ciitizen Records
- Sign-IN https://app.ciitizen.com/ 
 - Sign-UP https://ciitizen.com/syngap1 
 
All about Syndrome Management, let’s get beyond seizures.
https://twitter.com/CNSdrughunter/status/1612863006148366356 
 
PRAX-222 is number 3.  So exciting.  To see ASOs go into the Brain.
Stoke with #SCN1A
Ultragenyx with Angelman Syndrome
Praxis with #SCN2A via #PRAX222
Who will 4 be?  Will it be #CDKL5?  #STXBP1? SYNGAP1?
 
Very special Wednesday Warrior, please read - 19 year olds
https://twitter.com/cureSYNGAP1/status/1613263197930422272
 
Ellen’s Dx Journey - 40 year old
https://www.syngapresearchfund.org/post/131-is-it-genetic-my-40-year-journey-of-misdiagnoses-for-my-son 
 
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts: https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 89 of #Syngap10 - January 14,  2023 
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology