Soiree: incredible, Boston: Fabulous & two todos before SYNGP-A-PALOOZA ‘22, NASHVILLE #S10e82
ATLANTA was an incredible event and a success for more reasons than you think
– Check out this video: https://www.youtube.com/watch?v=NEEob7CzlfY
– Family connection is everything
– Raised funds from Atlanta community, it’s us folks.
Real but not True: https://www.psychologytoday.com/us/blog/finding-true-refuge/201702/real-not-true
BOSTON dinner, last night, was magical too. Check out this video: https://www.facebook.com/634352803/videos/512400737470459/
You have a WEEK to do RARE-X! Data to be shared at our meeting. https://syngap1.rare-x.org/ They will pull the data on Nov. 25th.
Send Summer a photo: [email protected]
Today! Stoke Update on STK-001 Phase 1/2a studies https://investor.stoketherapeutics.com/news-releases/news-release-details/stoke-therapeutics-host-webinar-and-conference-call-present
PMC 11/14-15 https://www.personalizedmedicinecoalition.org/events/Events/Personalized_Medicine_and_the_Patient
188+ Medical Records Matter: Sign up for CIITIZEN: https://www.ciitizen.com/syngap1/
SYNGAP1 ANNUAL MEETING aka “SYNGAP-A-PALOOZA”
NASHVILLE 12/1 & 2 https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-charting-our-rare-disease-treatment-path
8-8:30 WELCOME AND BREAKFAST – Lauren
8:30-10:45 SYNGAP1 CAREGIVERS: REALITY, RESILIENCE AND RESOURCES – Becky Sansbury & Nancy Kessler
11:00-12:00 REGISTRIES – Invitae, Simons, Rare-X w/Q&A
12:00-12:30 LUNCH
12:30-1:15 GETTING CLINICAL TRIAL READY – Kathie Bishop, Acadia
1:30-1:55 PRAXIS – Title TBD
1:55-2:40 TAKING ON BEHAVIORS – Jackie Kancir
2:40-3:10 MORE OF EVERYTHING BOOK LAUNCH – JR
3:25-3:50 SRF LATIN AMERICA – FONDO DE INVESTIGATION SYNGAP – Vicky Arteaga
3:50-4:35 SRF YEAR IN REVIEW – Rebecca Kohlhepp, Peter Hallburton, Pavel Gerovich
4:35-5:00 LOOKING TO THE FUTURE – Mike Graglia
6:30-8:30 Community Dinner @ Deacon’s New South
JOIN US – 12/1 RECEPTION: https://www.eventbrite.com/e/rare-advocate-reception-tickets-446184007377
JOIN US – 12/2 DINNER:
https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2022-caregiver-dinner
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts: https://syngap.fund/10a
Episode 80 of Syngap10 – November 10, 2022
#Syngap #SYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology
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