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JR’s book, ORCA & RareX, Data talks, Update Ciitizen, Syndrome Management, ASOs for the Brain, Libby & Espy #S10e89
Episode 89

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

CURE SYNGAP1 PODCAST aka SYNGAP10

January 16, 202310m 55s

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Show Notes

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…

 

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.

  1. Stoke with #SCN1A
  2. Ultragenyx with Angelman Syndrome
  3. Praxis with #SCN2A via #PRAX222
  4. 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

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