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Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. – Episode 6 of #Syngap10 – April 16th, 2021

SYNGAP10

Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. – Episode 6 of #Syngap10 – April 16th, 2021

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 -…
June 7, 2021

Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. – Episode 6 of #Syngap10 – April 16th, 2021

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]

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