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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

Support Clinical Trial Design for #SYNGAP1 via biobanks, EEGs and Fundraising. #S10e199
2026-02-17 54
All #SYNGAP1 Families need to take part in our Natural History Studies: ProMMiS & Citizen #S10e198
2026-02-06 80
Funding Priorities. Biorepository. Genetic Testing. How to move for a clinical trail! #S10e197 Monday, February 2, 2026 - Week 6
2026-02-02 68
Stoke Tx shows us that ASO Clinical Development is accelerating. #S10e196
2026-01-16 84
SYNGAP1 Related Disorder (SRD) Key Talking Points & why we need to use them. #S10e195
2026-01-11 82
Becky Quick launches CNBC Cures, Finding Your Voice & Key Talking Points for SRD! #S10e194
2026-01-09 98
Stockdale Paradox: Not getting out at Xmas, but we will win. #SynGAPCensus = 1,707. #S10e193
2026-01-02 84
AES ‘25 was incredible, Fundraising, PRV, Behaviors, Posters/Pubmed & Thank you. #S10e192
2025-12-20 85
New book by #SYNGAP1 mom for and about #GlassChild (Sibling of Special Needs) #S10e191
2025-12-01 96
AAV. Resources on cureSYNGAP1.org. Congrats to Ultragenyx & Novartis. Conf is in 5 days! #S10e190
2025-11-27 82
#CureSYNGAP1 Conf: 1 week! #GivingTuesday: 5 days. #ProMMiS. Mvmt & Sleep papers. #S10e189
2025-11-27 67
It’s time to UNLOCK THEIR TOMORROW - let’s raise funds. Also: CAMP4 and our name. #S10e188
2025-11-09 79
Clinical Research, AI Dx, #NL47, Survey, #Autism Press, 6 Days to Register for #SYNGAP1conf #S10e187
2025-10-25 79
#SyngapCenus 1,675 Teacher Handout CC/VNS Citizen Paper $CAMP starts GLP Tox CIRM funds S1 #S10e186
2025-10-03 94
F78.A1,the code for #SYNGAP1, turns 4, make sure we use it. #ICD10 for #RareDisease Update. #S10e185
2025-09-30 75
DSC - RDCRN - NCATS - NIH Press! #AAV in #Cell. SRF at CB. Scramble for SYNGAP1 next week! #S10e184
2025-09-26 75
You need a #CRID. SRF $1M to $CAMP noticed in Equity Research! #BeaconOfHope was great. #S10e183
2025-09-26 69
CURE SYNGAP1 joins biotech investors in CAMP4 Tx’s $100M Raise for ASO Program $CAMP #S10e182
2025-09-10 112
Why & How Do Patient Advocacy Groups Matter? Party Friday! #SYNGAP1Conf soon! #Elopement #S10e181
2025-09-08 67
#IEP: Syngapians don’t like the heat 🌡️ #BeaconOfHope #IEC2025 #CitizenHealth #DSC #CFC #S10e180
2025-08-29 92
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