# @curesyngap1 on YouTube

- **Type:** Video
- **Original URL:** https://youtube.com/watch?v=-6XnYok6EnY
- **Gondola URL:** https://gondola.cc/posts/27555902-curesyngap1-youtube
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/ab62bfd223.jpg
- **Posted:** 2025-02-04T05:12:32.000+00:00

## Caption

Don’t give up on your SYNGAPian at any age, Go Aaron! and advocacy matters -  #S10e160

Tuesday, February 4, 2025 - Week 6

CONVO - Parent of 18 year old
Travel now.
Get meds under control fast
Don’t do this alone
Don’t give up on the adults
Find doctors who want to learn and think, not dictate.

STUDIES OF THE WEEK - FRAZIER
https://curesyngap1.org/resources/studies/tracking-thinking-skills-and-behaviors-in-syngap1-patients/
Don’t underestimate this tool, please take part in this study.

Tracker page: https://docs.google.com/spreadsheets/d/1oQLNi85AUbISmcW0KbsgGn4cBK_4MNuvwGlKUUKLyIQ/edit?usp=sharing 

ADVOCACY SHOUT OUT
https://www.linkedin.com/posts/sara-driscoll-mba-pe-ab904b49_rdla-syngap1-advocacymatters-activity-7290475540266831873-L2su/?utm_source=share&utm_medium=member_ios

REGULATORY UPDATE - Feb 4 at 4PM EST.
https://www.epilepsiesactionnetwork.org/post/calling-all-epilepsy-stakeholders-join-an-update-on-the-national-plan-for-epilepsy

EF on EPILEPSY
Instagram - Facebook - LinkedIn - X

RESEARCH UPDATE
There are 317 papers on or related to SYNGAP1 since 1998, but 54 of those are in 2024!  So far 7 (but really 8 if you count Coller) for 2025.
https://pubmed.ncbi.nlm.nih.gov/?term=syngap1&filter=years.1998-2025&sort=pubdate&timeline=expanded

James Clement's paper is exciting: https://pubmed.ncbi.nlm.nih.gov/39878322/
JC LinkedIn: https://www.linkedin.com/posts/james-clement-chelliah_epigenetic-modulation-rescues-neurodevelopmental-activity-7290365551879569409-X_6G/

VOLUNTEER SPOTLIGHT
Aaron Harding is tireless 
Donate: https://giving.classy.org/campaign/661441/donate
Video - https://youtu.be/7LprhkhyU5I

CONFERENCE
Pre-register now: December 4 & 5 – https://cureSYNGAP1.org/Pre25 

VOLUNTEER 
Join us: https://curesyngap1.org/volunteer-with-srf/

SOCIAL MATTERS
- 3,922 LinkedIn.  https://www.linkedin.com/company/curesyngap1/
- 1,270 YouTube.  https://www.youtube.com/@CureSYNGAP1 
- 11,550 Twitter https://twitter.com/cureSYNGAP1
- 47k Insta https://www.instagram.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 160 of #Syngap10 
#CureSYNGAP1 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness  #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1

## Stats

- **Views:** 151
- **Likes:** 14
- **Shares:** 0
- **Comments:** 6

## Tags

id, autism, neurology, genechat, syngap10, epilepsy, raredisease, careaboutrare, syngapresearchfund, rarediseaseresearch, anxiety, patientadvocacy, autismawareness, s10e160, curesyngap1, gcchat, f78a1, intellectualdisability, epilepsyawareness

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