31K
Downloads
175
Episodes
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
Friday Apr 09, 2021
Friday Apr 09, 2021
- 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 don't get Dx'd, families do. Grandparent article who wants to talk to Barbara? https://syngap.fund/grand
- Sprint! Bakers dozen 13 groups over $1k! 62K+ https://syngap.fund/sprint
- Reminders: Enzo 8, Brazil, was our Warrior this week. http://syngap.fund/warriors
- Also two webinars coming up http://syngap.fund/webinar GI on 4/22 and Advocacy on 5/6.
Friday Apr 02, 2021
Friday Apr 02, 2021
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 well.
- Newsletter - Board announcement. Need some volunteers to write the newsletter!
Friday Mar 26, 2021
Friday Mar 26, 2021
Webinars: Jo, SRFCC1 and so many others are up our beautitful YouTube channel Syngap.Fund/YouTube for the old ones Syngap.Fund/Webinar for the new ones. Warriors: Do you read them? Is your SynGAPian amoung them? SynGAP.Fund/Warriors Work: Do you have time to help? Know a filmaker. Caren subtitles: we are working on them. Sprint4Syngap: we're uping the goal to $100k, we can do this.
Friday Mar 19, 2021
Friday Mar 19, 2021
- 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 them out! https://wahoodatfishing.com/
- SRF joins the American Brain Coalition.
All in 10 minutes!
Friday Mar 12, 2021
Friday Mar 12, 2021
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 #Sprint4Syngap is going
- A preview of some work we are doing on drug discovery with Worms and Fish
- A preview of work we are planning on EEG Biomarkers
- Why biomarkers matter
Learn more at www.SyngapResearchFund.org