SynGAP10 weekly 10 minute updates on SYNGAP1

Subscribe to the podcast! https://syngap.fund/10 = https://www.syngapresearchfund.org/syngap10-podcast We are making IPSCs!   https://syngap.fund/ipsc = https://www.syngapresearchfund.org/post/another-srf-contribution-to-syngap1-research-patient-derived-cell-lines-to-test-treatments Join the largest SYNGAP1 study on earth https://syngap.fund/nhs Learn more at https://syngap.fund/rarex Watch o...

Understand where science is today with Erik, https://podcasts.apple.com/us/podcast/rarecast/id954082143?i=1000519319382 Kyle’s tweet: Fundraising raises awareness. https://twitter.com/kyleabryant/status/1394413673016446981?s=21 Effie’s Once Upon a Gene episode: It’s Ok that your not OK https://effieparks.com/podcast/episode-080-megan-devine My birthday fundraiser: https://www.facebook.com/donate/4...

SYNGAP10 - Ep. 10 - 14 May 2021 - Scales, Grands, Ciitizens, Kayo, iPSC Validated Scales - Congrats to the ORCA Team at Duke https://syngap.fund/orca - Join Dr. Frazier to learn more about the NET www.syngapresearchfund.org/families/resources/webinars Grand parents article https://syngap.fund/grand - Thank you Barbara for this article https://www.syngapresearchfund.org/post/loving-a-grandchild-wit...

In this episode, Mike reflected on a conversations with and questions from SYNGAP parents who have responded to previous episodes of SYNGAP10.  As usual, it was packed. Thanks to DISORDER for listing SYNGAP10 as one of the best Rare Disease podcasts.  We are honored.   https://www.rarediseasefilmfestival.com/rarediseasepodcasts Reflections on conversation with parents, especially th...

This episode is an absolute must.  Don't miss it. - Reminder that #SSB30 is happening now, the first pharma sponsored study on #ciitizen.  If you are enrolled in Ciitizen, start doing your seizure tracker today: 🔗 https://Syngap. Fund/ST - If you have not yet signed up for Ciitizen, there is still time, it's free: https://www.ciitizen.com/syngap1/ - 🚨 Breaking: We have reason to believ...

Syngap. Fund/Sprint We have raised $104k, so far!  Look for the #sprint4syngap tomorrow! Thanks to Henry Anderson of the Pats for a shoutout! The fund will go to an upcoming grant at BCH EEG Biomarker work Analysis of Ciitizen data into a study Ciitizen either sign up ciitizen.com/SYNGAP1 or join the survey syngap.fund/ST We had meetings with CB, PMC, ELCC & REN this week. Help SRF by goi...

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 behavio Do the surveys!  Links are in the newsletter and here: syngap.fund/ssb-Behavior syngap.fund/ssb-sleep syngap.fund/ST STX...

Biomarker EEG work - very exciting IPSCs - Prime editing, Base editing, tRNA etc.  Based on Ciitizen data! SSB30 Webinar!  Check it out on April 15th. https://syngap.fund/ssb Seizure, Sleep & Behavior Ciitizen 103 signed up, 8 are VUS, 95 spots used, 5 TO GO.  Sign up now: Ciitizen.com/SYNGAP1 CNF Caregiver survey, due April 23rd.     https://syngap.fund/cnf Kids...

SYNGAP10, episode 4, 2 April 2021 starts with incredible news about a forthcoming study. Ciitizen survey pre-trial is signed! Coming soon, look for an email.  If you have not joined, ciitizen.com/SYNGAP1 #SyngapCensus = 762 Caren movie is up - great work on subtitles This week alone - 2 companies, 2 labs, 1 wed warrior Kyle from ohio, 15 - One amazing Webinar #Sprint4Syngap - We are doing wel...

Webinars: Jo, SRFCC1 and so many others are up our beautiful YouTube channel Syngap. Fund/YouTube for the old ones Syngap. Fund/Webinar for the new ones. Warriors: Do you read them?  Is your SynGAPian among them?  SynGAP.Fund/Warriors Work: Do you have time to help?  Know a film maker.  Caren subtitles: we are working on them. Sprint4Syngap: we're upping the goal to $100k, we c...

Check out the Eat. Sleep. Cure. Mug, love it! #Sprint4Syngap is going well, thanks to leading families and teams. Lots of webinars coming soon, don't miss next week with Jo syngap.fund/teendx Sign up for Ciitizen.com/SYNGAP1 Cell lines and biobanks. E4 sensors to researchers! CNF profiles our support group. Getting the next board together. Praxis earnings call Wahoodatt Fishing is awesome, check t...

Mike's first episode!  A quick update on the week in SYNGAP1, what the SynGAP Research Fund did this week on behalf of families. - Engaged with a new BioPharma company interested in starting a program on SYNGAP1. - Connected ANOTHER company with CIITIZEN.com/SYNGAP1 so that they can use the data we have to do a trial as quickly as possible. - How to sign up for CIITIZEN.com/SYNGAP1 - How #Spr...