Fondo sets the bar for LatAm Engagement, Samar’s interview, Andrade’s paper, the 2nd Soiree was a hit, grants are rolling in! — #S10e113

Super Heroine: Vicky Arteaga

Fondo Syngap is tireless:

- 2 Congreso en Español on September 23, 2023

https://www.syngapresearchfund.org/professionals/2023-en-espanol

Spanish Podcast #CafeSyngap1e01 

- YouTube https://www.youtube.com/watch?v=dh0lPuLLUFg

- Google https://podcasts.google.com/feed/aHR0cHM6Ly9hbmNob3IuZm0vcy9lNjAyMDgwMC9wb2RjYXN0L3Jzcw 

- Spotify https://spotify.link/MJZZVMoKGCb 

- Amazon Music https://music.amazon.com/podcasts/6e65b878-4506-4882-b6cd-1ea873c0ba7e/caf%C3%A9-syngap1 

#FondoSYNGAP

 

SRF is at ILAE

- Let’s thank Katrien Deckers & Olga for representing SRF at ILAE in Dublin Sep 2nd - 6

- Vicky on one of the panels on Saturday called: Clinical diagnostic challenges in the genetic epilepsies and opportunities for precision treatment 

 

Super Heroine: Ashley Frye with Suzanne Jones and Samar Katnani

#SyngapStories #KETO #MAD

- Samar Interview https://twitter.com/cureSYNGAP1/status/1693987401952342442?s=20

- Keto works, remember this old gem? https://www.syngapresearchfund.org/post/ketogenic-diet

 

Where have I been all week?

- Syngap Stories about Tony https://www.syngapresearchfund.org/podcast-episodes/syngap1-stories-episode-016 

Soiree was AMAZING
- Tweet https://twitter.com/curesyngap1/status/1696595956467183904
- Ashley’s Speech https://www.youtube.com/watch?v=qw2mG3wTjfc

Super Heroine: Sydney Stelmazek

- CHOP Update

- 16 seen so far

- 27 signed up

- QEEG is SYNGAP1 compatible https://twitter.com/phalliburton/status/1694845802336641315?s=20 

 

CANNONBALL 3 is coming!  October 4-6.  

 

Super Heroine: Dr. Danielle Andrade  

Huge thanks to Dr. Andrade for this paper on Adults with SYNGAP1 https://twitter.com/DrDaniAndrade/status/1694717693080092976?s=20

 

Proposals came in today, we need to raise money!
Finally, we have at least 6 grant proposals received!  Donate and Fundraise! https://www.syngapresearchfund.org/donate/donate 

Share you time and blood too!
Volunteer - https://www.syngapresearchfund.org/volunteer-with-syngap-research-fund

Donate to the biorepository in OH or IL:
- Sept 22, Liberty Township, OH: IRF2BPL Foundation (Home 2 Suites, 7145 Liberty Centre Drive, Liberty Township, OH 45069)

- Sept 29, Chicago, IL: KCNQ2 Cure Alliance Conference, September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611

 

CONFERENCE 

Registration link: https://Syngap.Fund/Orlando  

Hotels ASAP: https://Syngap.Fund/2023hotel 

Shirts https://www.bonfire.com/srf-syngap1-conference-2023/ 

 

Volunteer with SRF! Info@SyngapResearchFund.org 

 

This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here 

- https://www.syngapresearchfund.org/syngap10-podcast

Apple podcasts: 

https://podcasts.apple.com/us/podcast/syngap10-weekly-10-minute-updates-on-syngap1-video/id1560389818

Episode 113 of #Syngap10 - September 2, 2023

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