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

SYNGAP10

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 16, 2023

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…

 

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

You may also like

We gratefully acknowledge the many organizations that have generously supported our podcasts and platform.

Network Sponsors and Advertisers

Event and Media Partners

Buffer LinkedIn WhatsApp