Progress in Studies, Trials & Community Milestones; Conference #S10e153

Progress in Studies, Trials & Community Milestones; Conference #S10e153

STUDIES AND A TRIAL

FRAZIER https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/

CHANGES (UK) https://curesyngap1.org/resources/studies/changes-study-adults-an-investigation-into-behaviour-and-physiology-in-syngap1/

PNO https://curesyngap1.org/resources/studies/pregnenolone-treatment-trial-for-individuals-with-autism/

Science:

• Chow Press – https://curesyngap1.org/blog/dr-clement-chow-at-the-university-of-utah-receives-support-from-syngap-research-fund-srf-to-accelerate-therapeutic-development-for-syngap1-related-disorders-pr30/
• Sohal Webinar – https://curesyngap1.org/resources/webinars/94-targeting-gamma-oscillations-to-improve-cognition/ or https://fb.watch/vBYXj4FY7A/ 

Conference – Conference is 1 month 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

RESEARCH UPDATE

There are 304 papers on or related to SYNGAP1 since 1998, but 46 of those are in 2024!

https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2024&sort=pubdate&timeline=expanded

Latest is from Canada, where they look at the impact of SYNGAP1 on auditory cortex function, social behavior and ability to extinguish fear memories.

https://www.jneurosci.org/content/early/2024/10/08/JNEUROSCI.0946-24.2024.long

FUNDRAISING

    – Coast2Coast Challenge $92,754 Syngap.Fund/C2C 

   – Missense Account of the Fund $25,940

https://secure.givelively.org/donate/syngap-research-fund-incorporated/missense-fund

   – Charmander $10,585

https://secure.givelively.org/donate/syngap-research-fund-incorporated/running-for-charmander
  – Emmy $8,347

https://secure.givelively.org/donate/syngap-research-fund-incorporated/save-emmy-s-future-fund-syngap1-research 

Minted Cards – 20% discount, 15% to SRF, code FUNDRAISESYNGAP – https://Syngap.Fund/Minted

Lovely blog on Scramble: https://curesyngap1.org/blog/swinging-for-a-cause-the-3rd-annual-scramble-for-syngap1/

ZOOM BACKGROUND

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

VOLUNTEER 

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

FUNDRAISE

https://syngap.fund/FR 

CFC: #33321 https://curesyngap1.org/srf-cfc-syngap1-combined-federal-campaign/

SOCIAL MATTERS

 – 1,200 YouTube.  https://www.youtube.com/@CureSYNGAP1 

 – 3,818 LinkedIn.  https://www.linkedin.com/company/curesyngap1/
– 11,889 Twitter https://twitter.com/cureSYNGAP1
– 47k Insta https://www.instagram.com/curesyngap1/
– 442 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 153 of #Syngap10 

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