Annie -  #S10e155

Tuesday, November 26, 2024

Annie Passed yesterday #SynGAPAngel 

https://www.linkedin.com/posts/graglia_the-syngap1-community-is-at-a-loss-as-we-activity-7267225798602874880-W9hw?utm_source=share&utm_medium=member_desktop 

 

SRF NEWS

• Stories just keeps getting better: https://curesyngap1.org/podcasts/syngap1-stories/stacey-miller/
• New family video, use YouTube auto translate: Juliana Meza https://www.youtube.com/watch?v=NLkqswEvAQs

 

Two trials to consider

• https://med.stanford.edu/autism/studies/pregnenolone-randomized-controlled-trial.html age 14-25
• https://deepdeestudy.com/ list of sites: NJ & FL

 

Two studies we all need to sign up for

• Sign up for Frazier https://syngap.fund/eye2 https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/
• Citizen Health https://www.citizen.health/partners/srf 

 

Conference - Conference is 9 days away!

• Lineup: Science Day lineup - https://x.com/curesyngap1/status/1851723428677456093
• Agendas are up! https://curesyngap1.org/events/conferences/syngap1-conference-2024/

• Thursday Reception at the Hotel: https://www.eventbrite.com/e/rare-research-reception-tickets-1003668087267
• Friday Join us for dinner! https://secure.givelively.org/event/syngap-research-fund-incorporated/syngap1-conference-2024-caregiver-dinner

 

FUNDRAISING

• Coast2Coast Challenge $152,592 Syngap.Fund/C2C 
• Minted Cards - 20% discount, 15% to SRF, code FUNDRAISESYNGAP - https://Syngap.Fund/Minted
• FUNDRAISE https://syngap.fund/FR 
• CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/

 

VOLUNTEER SPOTLIGHT: Stephanie Decker

https://www.linkedin.com/in/stefanie-decker-cpa-38776696/

 

ZOOM BACKGROUND

https://drive.google.com/file/d/13jhPIBo-o1sHchEJz6KttocT1_h7GKZE/view?usp=sharing 

 

VOLUNTEER 

https://curesyngap1.org/volunteer-with-srf/

 

SOCIAL MATTERS

 - 1,230 YouTube.  https://www.youtube.com/@CureSYNGAP1 

 - 3,851 LinkedIn.  https://www.linkedin.com/company/curesyngap1/
- 11,779 Twitter https://twitter.com/cureSYNGAP1
- 47k Insta https://www.instagram.com/curesyngap1/
- 456 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!

https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917

Episode 155 of #Syngap10 

#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1