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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Sunday Jan 15, 2023
Sunday Jan 15, 2023
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
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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