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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 Jun 06, 2021
Sunday Jun 06, 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: Mike@SyngapResearchFund.org
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