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CURE SYNGAP1 PODCAST aka SYNGAP10

CURE SYNGAP1 PODCAST aka SYNGAP10

Business:Non-Profit

Keep growing our community, we need each other!

Keep growing our community, we need each other!

2021-09-24
Download

- 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

view more

More Episodes

How to tell your family about SYNGAP1
2022-01-07 260
2021 by the numbers, 985 patients counted, exciting work ahead!
2021-12-30 217
Let’s catch the Genetic Therapy Tsunami for SYNGAP1!
2021-12-17 231
This is Real Life! Science is moving forward and we are on board
2021-12-10 218
Let’s make sure SYNGAP1 is cured in our lifetime. It’s up to us.
2021-12-04 263
Support SRF this GivingTuesday! With guest host, Caitlin Kaspar, Syngap sibling, nonprofit professional
2021-11-26 223
Grateful for the incredible SRF team/family...
2021-11-19 225
Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.
2021-11-12 217
Multiple studies enrolling now, start with Ciitizen and keep going...
2021-11-05 212
Gather and connect. Learn from those who have come before. Keep hope alive!
2021-10-29 240
Gala. Webinar. Crypto SunBlocks. ICD 10 AND 11. Thank you. Sign up for Ciitizen by 11/15/21.
2021-10-22 239
Coming in hot!  BCH Grant putting Ciitizen to work & the Gala is next week!
2021-10-15 251
Inspiring your community and raising awareness for SYNGAP1
2021-10-08 225
F78.A1 is the ICD-10 code for 883 SynGAPians today! #UFDcure Cannonball in 5 days! Guest host, Ashley Frye
2021-10-01 299
Rarebase explained and who is going to win the race, we don‘t care, we just need it fast.
2021-09-17 263
The future is coming, let’s build it!
2021-09-10 256
Hope is the smartest move!
2021-09-03 193
Two conversations with the same conclusion...
2021-08-28 226
Telling our story and why it matters.
2021-08-20 218
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