Back2School, Unravel Bio, Support Gala & Scramble, Prez Search, Fondo & more great news #S10e148
📝Full show notes: https://syngap.fund/n148
BACK TO SCHOOL 2024
Push the schools to do better, at every turn.
Different than 2023: https://curesyngap1.org/podcasts/syngap1-stories/syngap1-stories-episode-016-mike-graglia
STUDY
https://Syngap.Fund/UB (Unravel Biosciences)
3 forms to fill out, please let us know if you want to participate.
PRESIDENT & COO SEARCH
https://curesyngap1.org/blog/srf-is-hiring-position-of-president-chief-operating-officer-coo/
RESEARCH UPDATE
There are 293 papers on or related to SYNGAP1 since 1998, but 33 of those are in 2024! Tied for 3rd place, but this year will be over 43, I’m certain.
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded
Latest: GOS UK team calls for more OT and ST vs other patients with DD/ID
https://pubmed.ncbi.nlm.nih.gov/39148034/
PRESS ABOUT FOF (Friends of the Fund)
Fondo joins FECOR –
https://www.instagram.com/p/C-8dJG7vEDd/?igsh=ZmYxYjQzMm43aHlp&img_index=1
TJB –
X https://x.com/JMGraglia/status/1825949467973136804
L
https://www.linkedin.com/posts/graglia_how-a-midwife-became-a-neuroscientist-to-activity-7231714648767479808-k13w?utm_source=share&utm_medium=member_desktop
F https://www.facebook.com/mike.graglia/posts/pfbid02UjRLWVQRzrD6j3YngnJx1R49cUBb188zKsxauvanSaZnAh7pW6UQntQB7QKFKqSwl
VOLUNTEER NEEDS
Thank you Grants, Aaron & Sarah
Fundraising and Finance
Volunteer! https://curesyngap1.org/volunteer-with-srf/
https://syngap.fund/FR – https://curesyngap1.org/srf-fundraising-resources/
Smarts for Syngap – DC Trivia Night – 14 Days – September 4, 2024
Scramble for Syngap – 45 days! – October 5, Greer, South Carolina https://curesyngap1.org/events/fundraisers/scramble-for-syngap-2024/
SynGAP Research Fund Gala – 59 days! – October 18, Farmingdale, NJ https://curesyngap1.org/events/fundraisers/srf-gala-honoring-caren-leib/
Missense Account of the Fund $21,684
https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund
Emmy $6,549
YOU?
https://curesyngap1.org/blog/fundraising-the-backbone-of-research/
CALENDAR MANAGEMENT
Conference is 106 days away, WE HAVE A ROOMBLOCK & Registration is live!
https://curesyngap1.org/events/conferences/syngap1-conference-2024/
Conference Registration – 57 for Science Day & 66 for Family Day
CB Blood Donation accelerates Science! These samples are being used today!
PWS/USP7 conference (Atlanta, GA, September 26-27, 2024)
COMBINEDBrain conference (Kansas City, MO, September 29th, 2024)
SYNGAP1, SLC6A1, Cure GABA-A Variants conference (Los Angeles, CA, December 4-5, 2024)
https://curesyngap1.org/resources/studies/combinedbrain-biorepository-roadshow-2024
SOCIAL MATTERS – AMPLIFY SRF TO MAKE SURE FAMILIES FIND US
– 1,070 YouTube. https://www.youtube.com/@CureSYNGAP1
– 3,744 LinkedIn. https://www.linkedin.com/company/curesyngap1/
– 11,375 Twitter https://twitter.com/cureSYNGAP1
– 48k Insta https://www.instagram.com/curesyngap1/
– 420 TikTok https://www.tiktok.com/@curesyngap1
NEWLY DIAGNOSED?
New families have resources here! https://syngap.fund/Resources
Podcasts, give all of these a five star review!
SRF Channel – https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917
Episode 148 of #Syngap10 – Wednesday, August 21th, 2024
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1
