SynGAP10 weekly 10 minute updates on SYNGAP1
Business:Non-Profit
- Correction: Last week, reminder, we are here to clear the path for whomever wins, we don't care who wins we want this race to be won and easier to finish for everyone.
- Big thought: Complex Population, about to get more complex, "Post-Intervention"
- Sign up for Ciitizen: https://www.ciitizen.com/syngap1/
- Remember that Duke presentation, here it is: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant/
- Next week, lets' get connected Global Genes Conference https://globalgenes.org/event/rare-patient-advocacy-summit/
- Simons Searchlight in Spanish, English is still being scheduled: https://syngap.fund/SimonsSearchlight/
- Interesting paper on #SYNGAP1 and Sleep, the best part is the suggestion at the end to use this for a clinical endpoint! https://twitter.com/cureSYNGAP1/status/1439825860245090306?s=20
- Not Alone Coloring Book! https://syngap.fund/notalone
- Cannonball 11 DAYS . 3 dads driving across the US https://syngap.fund/cball #UFDcure
- Go to the GALA! 29 DAYS! https://syngap.fund/gala
- Easy to do https://syngap.fund/GNP
- Donate to our current effort for Clinical Trial Readiness https://Syngap.Fund/CTR
- Sign up for this #podcast #SYNGAP10 here https://syngap.fund/10
- What is #SYNGAP1? https://www.syngapresearchfund.org/home/what-is-syngap1
This was Episode 28 of #Syngap10 - September 24th, 2021
#F78A1 #ICD10 #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics
SRF Supported Publication on NET, Siblings, Webinars, Frog Video, Clinical Trial Questions… #S10e101
💯Episode 100! Survey, GI, Biorepository, Press, PG, ASO Training, Sprint3 in 3 weeks!!! #S10e100
🌞🐒🐸SYNGAP1 is HOT: Gene Therapies, Monkey, COMBINEDBrain, Biorepository, Frazier, Frogs, 1,251 patients & studies #S10e99
Building the SYNGAP1 SRF House - using the Milken Fastercures Research Partnership Maturity Model - #S10e98
Talking to families with 2 year olds, 3 Webinars not to miss, and Sprint4Syngap, Stoke & Praxis Updates, GG Next 2023 Report - #S10e97
Rare Disease Day 2023 was epic and you should have been there. Sprint and Webinar update. #S10e96
Rare Disease Day 2023 - Hattie Video, Coller & McKee Webinars, Missense SYNGAP1 iPSC, $20k, Apply for a Grant, Sprint4Syngap, Join us. #S10e95
Time to fundraise for SYNGAP1 Research! Great info on Webinars, Blog, PRAX-222 & SynGAP Stories… #S10e94
More on ENDD gift at Penn, but first, Finding SYNGAP1 Patients, Hotels & Grief in Florida - #S10e93
10 Reasons SYNGAP-land is hopeful & exciting today #S10e92
Why we need to keep talking about SYNGAP1 #S10e91
Seven Ways to advance SYNGAP1 Research this week. Post video, take survey, tell us your opinion on Rare-X/Simons, Update Ciitizen, #SRFWW, JR’s book, Plan. #S10e90
JR’s book, ORCA & RareX, Data talks, Update Ciitizen, Syndrome Management, ASOs for the Brain, Libby & Espy #S10e89
New Grant, Rare Affair, SYNGAP1 research and events #S10e88
SRF 2022 Numbers, Great Press, a wonderful wedding. #S10e87
#SYNGAPconf22 was a hit, join us in 2023… #S10e86
#AES2022 clearly showed us that SRF & SYNGAP1 have arrived… #S10e85
#ImpatientOptimism is the appropriate feeling for this moment… #S10e84
#StokeTx just showed us the future & will open the SYNGAP1 meeting #S10e83
Soiree: Incredible, Boston: Fabulous; & two to-dos before SYNGP-A-PALOOZA ‘22, NASHVILLE #S10e82
Create your
podcast in
minutes
It is Free
The Commercial Edge: Unleash the Power of People
The emPOWERed Half Hour
Social Dallas Podcast
Change Church Podcast
Six Degrees with Kevin Bacon
Nonprofits Are Messy: Lessons in Leadership | Fundraising | Board Development | Communications
Advocacy Scoop Podcast