# @curesyngap1 on YouTube

- **Type:** Video
- **Original URL:** https://youtube.com/watch?v=DVHOLZNRUM4
- **Gondola URL:** https://gondola.cc/posts/9689457-curesyngap1-youtube
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/thumbnails/ce4cbd10f8.jpg
- **Posted:** 2023-11-03T21:49:31.000+00:00

## Caption

The more we own our EEGs, the sooner we get a biomarker.  Simple. And remember to get Dinner tickets for the conference! - #S10e123

Three Todos:

1 - Come to the #SRFconf and be sure to buy dinner tickets!
https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund 

2 - DC Families, go to this 11/14 event EAN matters: https://shoutout.wix.com/so/c7OkLF5nz

3 - Sign up for NET Study, email KHuba@jcu.edu check out #S10e122 and the #SRFFrazier Release if you are not up to date. (14 so far, ½ returning)
https://www.eurekalert.org/news-releases/1006753

EEGS MATTER

To get an EEG Biomarker, you need to collect EEGs.  Not simple.

This eg from Angelman in 2021. (Syndrome defined in 1965, UBE3A in 1997)
https://www.sciencedirect.com/science/article/pii/S2667174321000380

Check out this 2023 example for SCN2A (gene 1989, patient 2001) https://www.medrxiv.org/content/10.1101/2023.10.24.23296360v1

SYNGAP1 (gene 1998 Huganir, patient 2009 Michaud)
Where’s our paper?

Beacon Biosignals is a company we know: https://beacon.bio/

You are entitled to a copy of your medical records under HIPAA and they have 30 days to get it to you.
https://www.hhs.gov/hipaa/for-professionals/faq/right-to-access-and-research/index.html 

EEGs (in .edf format) are much bigger than the rest of your medical records (pdf and images).  Check out Tony’s
https://drive.google.com/drive/folders/1vUMRMtnvTJJi7WEwcSrDSLArGL3vzFxH?usp=sharing 

Give all three of our podcasts 5 stars everywhere.  
https://podcasts.apple.com/us/channel/syngap1-podcasts-by-srf/id6464522917 

This is a podcast subscribe!
https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1/id1560389818 

Episode 123 of #Syngap10 - November 3, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat

## Stats

- **Views:** 103
- **Likes:** 7
- **Shares:** 0
- **Comments:** 1

## Tags

intellectualdisability, epilepsyawareness, srffrazier, id, autism, s10e122, srfconf, neurology, genechat, syngap10, epilepsy, raredisease, careaboutrare, syngapresearchfund, rarediseaseresearch, anxiety, patientadvocacy, autismawareness, gcchat, s10e123

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