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Over 1200 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/
Episodes
Monday Sep 18, 2023
Monday Sep 18, 2023
Congrats to…
- Allan Blake on his airborne fundraiser for SRF UK
- Aaron and Monica Harding on their Military Lifegiver Podcast (start at 7 minutes)
- Beacon on their FDA approval on the Sleep Headband Dream 3S
- Soiree 8/26 - $300K net raised by Suzanne
- Katrien on the ILAE #SYNGAP10 #S10e115
Webinar coming up:
Behaviour, Cognition and Sensory Processing in People with SYNGAP1
Register: https://us02web.zoom.us/webinar/register/WN_tXX0ZKcgQqm9heZgf0AfDg
Sept 28 @ 9am PT/ 5pm GMT
Still a classic: Mike to FDA on SYNGAP1 For ORCA https://www.youtube.com/watch?v=AObE7NhSlmg&t=447s
Events to mention in SYNGAP10
- Global Genes, DEI - 9/18 - 9/23 - Vicky and Mike
- 2nd Scientific Conference in Spanish (virtual) 9/23
- Cannonball 10/4-10/6; Brett, Peter, Monica & Reece listen to Stories Episode 12 MH!
- Scramble 10/7 Julie Miles https://syngap.fund/scramble
- Park City Epilepsy Mtg 10/15 - 10/17; Mike, JR
- Gala 10/21 Nancy Kessler https://syngap.fund/CLG3
- Conference 11/30 & 12/1 + Sea World or Disney 12/2
Conference - Sign up by Halloween - We need head counts.
- Registration link: https://Syngap.Fund/Orlando
- Hotels: https://Syngap.Fund/2023hotel
- Shirts: https://www.bonfire.com/srf-syngap1-conference-2023/
Share your time and blood too!
- Sign up for ciitizen!
- Sign up for CHOP!
- Volunteer!
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
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/channel/syngap1-podcasts-by-srf/id6464522917
Episode 116 of #Syngap10 - September 18, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
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