SynGAP10 weekly 10 minute updates on SYNGAP1
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Rare Disease Day 2023 - Hattie Video, Coller & McKee Webinars, Missense SYNGAP1 iPSC, $20k, Apply for a Grant, Sprint4Syngap, Join us. #S10e95
It’s RARE DISEASE DAY! Hattie has a new video!
https://www.syngapresearchfund.org/families/movies
I’m off to DC for NIH Day and RD Advocacy with Everylife Foundation
- https://ncats.nih.gov/news/events/rdd
- https://everylifefoundation.org/rare-advocates/rare-disease-week/
We have a $20k match!
- https://syngap.fund/rdd23
- https://secure.givelively.org/donate/syngap-research-fund-incorporated/srf-rare-disease-day-2023
Deadline for Grants is 3/1
- https://www.syngapresearchfund.org/post/134-apply-for-syngap1-research-grants-by-march-1st-or-september-1st
#Sprint4Syngap
- https://syngap.fund/sprint23
- Main page https://secure.givelively.org/donate/syngap-research-fund-incorporated/sprint4syngap-2023
- 15 Teams! Eight already raising funds: Team Tavilla, Emma Mae, Reef, Kai, Naya, Hope4Hadley, Teddy & Lizzy. Seven more ready to go.
- Remember, there is an adaptive bike in play!
- New family has an event to go to… COMMUNITY
Amazing Webinars
- Jeff Coller - mRNA - March 16th https://www.syngapresearchfund.org/webinars/68-harnessing-messenger-rna-metabolism-for-the-development-of-precision-gene-therapy-syngap1
- Jillian McKee - April 27th - https://syngap.fund/mckee
Ciitizen SYNGAP1 count is at 209! Sign up or Update your Ciitizen Records
- Sign-UP https://ciitizen.com/syngap1
- Sign-IN https://app.ciitizen.com/
iPSCs & Missense Mutations/Variants
- https://syngap.fund/ipsc
- https://www.syngapresearchfund.org/ips-cell-models
- 30 lines, 3 missense on the list, 1 more in Europe I know about
- I urge you to raise for cell lines if you are a missense. $4k for a line, $7k for an isogenic control, $11k to make sure a mutation has a chance to be studied. 30% risk on the first line.
There is so much work to do, volunteer
- Info@SyngapResearchFund.org
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here
- https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts:
https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818
Episode 95 of #Syngap10 - February 28, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
Webinars, Mugs, Blog, GCs, Ciitizen, Cure, OUAG, CTR
Connection is everything!
Great things afoot! Join us. - Episode 20 of #Syngap10 - July 23rd, 2021
Let’s @cureSYNGAP1 - Episode 19 of #Syngap10 - July 16th, 2021
”Seizures, Communication, Behavior, Sleep, Other” Is that right? - Episode 18 of #Syngap10 - July 9th, 2021
Let’s get to work for these 808 kids! - Episode 17 of #Syngap10 - July 2nd, 2021
Put your mask on first. - Episode 16 of #Syngap10 - June 25, 2021
Splash & #SYNGAPlove in 3 days, DSC & BCH Grants, more ICD attention! - Episode 15 of #Syngap10 - July 18th, 2021
Community and #SYNGAPlove - Episode 14 of #Syngap10 - June 11, 2021
Newsletter, SSB, Ciitizen growth, Frazier, Sprint, ICD-10 & you are not alone. - Episode 6 of #Syngap10 - April 16th, 2021
The things we do for LOVE! - Episode 13 of #Syngap10 - June 4th, 2021
IPSCs, Ciitizens, Sleep Webinar, NET Webinar, Birthday Party on FB! - Episode 12 of #Syngap10 - May 28th, 2021
We must be hopeful - and it makes sense to be so. - Episode 11 of #Syngap10 - May 21st, 2021
Scales, Grands, Ciitizens, Kayo, iPSC - Episode 10 of #Syngap10 - May 14th, 2021
Adults, New parents, ABA, Misense and Money - Episode 9 of #Syngap10 - May 7th, 2021
BREAKING NEWS 🚨re ICD-10 & other goodness around #SSB30 & #sprint4syngap - Episode 8 of #Syngap10 - April 30th, 2021
Sprint. BCH. Ciitizen. Meetings. Clicks. Docs. Wed. Volunteer! - Episode 7 of #Syngap10 - April 23rd, 2021
EEG Biomarkers, SSB Study, Ciitizen, CNF Survey, Sprint4Syngap - Episode 5 of #Syngap10 - April 9th, 2021
Ciitizen Study happening! #SyngapCensus = 762, Caren, Kyle & Sprint4Syngap - Episode 4 of #Syngap10 - April 2nd, 2021
Webinars, Warriors, Work, Caren subtitles & Sprint4Syngap - Episode 3 of #Syngap10 - March 29th, 2021
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