Fondo sets the bar for LatAm Engagement, Samar’s interview, Andrade’s paper, the 2nd Soiree was a hit, grants are rolling in! — #S10e113
CURE SYNGAP1 PODCAST aka SYNGAP10
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Show Notes
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! [email protected]
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here
- https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts:
Episode 113 of #Syngap10 - September 2, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat