Episode 6
Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. - Episode 6 of #Syngap10 - April 16th, 2021
CURE SYNGAP1 PODCAST aka SYNGAP10
June 7, 202110m 27s
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Show Notes
SYNGAP10 - Ep. 6 - 16 April 2021
- SRF Newsletter yesterday, make sure you sign up!
- SSB is off and running.
- Webinars, another tomorrow in Spanish
- Sprint next Saturday - April 24th
- Celebrating Caren is now live and about to go on the circuit thanks Nancy, Daniel & illumina
- SSB - Seizure sleep and behavior
- Do the surveys! Links are in the newsletter and here:
- syngap.fund/ssb-Behavior
- syngap.fund/ssb-sleep
- syngap.fund/ST
- STXBP1 has joined ciitizen - Now they are joining SYNGAP1, FOXG1 Tess Research (slc13a5), Rett
SCN2A via Praxis, SCN8A & BPAN - Tom Frazier (Autism Speaks, CSO) has completed Phase 1 of NET, now working on the tool. He was just on the Today Show 2 weeks ago. - Here we are partnering with Malan, PTEN & ADNP.
- Sprint4Syngap is going strong: $69k+! Way to go #TeamMyla!
- FondoSyngap.org is live, great work Vicky & Marta!
- We asked for an ICD10 code over a year ago - CDKL5, Dravet, Angleman's all have one, what's going on?
- You’re not alone, reach out: [email protected]