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
2021 by the numbers, 985 patients counted, exciting work ahead!
Let’s catch the Genetic Therapy Tsunami for SYNGAP1!
This is Real Life! Science is moving forward and we are on board
Let’s make sure SYNGAP1 is cured in our lifetime. It’s up to us.
Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional
Grateful for the incredible SRF team/family...
Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.
Multiple studies enrolling now, start with Ciitizen and keep going...
Gather and connect. Learn from those who have come before. Keep hope alive!
Gala. Webinar. Crypto SunBlocks. ICD 10 AND 11. Thank you. Sign up for Ciitizen by 11/15/21.
Coming in hot! BCH Grant putting Ciitizen to work & the Gala is next week!
Inspiring your community and raising awareness for SYNGAP1
F78.A1 is the ICD-10 code for 883 SynGAPians today! #UFDcure Cannonball in 5 days! Guest host, Ashley Frye
Rarebase explained and who is going to win the race, we don‘t care, we just need it fast.
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Two conversations with the same conclusion...
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