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SynGAP10 weekly 10 minute updates on SYNGAP1

SynGAP10 weekly 10 minute updates on SYNGAP1

Business:Non-Profit

Getting ready for Global Genes, Cannonball Scramble Gala & the SYNGAP1 Conference — #S10e116

Getting ready for Global Genes, Cannonball Scramble Gala & the SYNGAP1 Conference — #S10e116

2023-09-18
Download

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

view more

More Episodes

Nancy Leib Kessler is exceptional: Fundraising, Sibling, Advocating. Do Frazier and come to #SRFConf, #S10e151
2024-10-18 80
UFDTech, Eye-tracking, Praxis #DEEpDive, Stoke, Lacoste, Devinsky, #SRFConf, #S10e150
2024-09-24 90
Join Frazier Study, Combined Federal Campaign (33321), Unravel Study, new papers & Chronic Grief #S10e149
2024-09-10 93
Back2School, Unravel Bio, Support Gala & Scramble, Prez Search, Fondo & more great news #S10e148
2024-08-22 99
#SRFadvocates, #ColinFarrellFoundation, Adult Advocacy & the Best Science Team Ever #S10e147
2024-08-11 99
Zempleni, #SYNGAPconf, #ProjectACE, #ACENHS, Newsletter, #S10e146
2024-07-27 119
A tale of three grants… Coba Grant, Quadrato Grant & Anderson Paper! #S10e145
2024-07-11 131
1,454! Including Hope. Keto, Heat, Sleep Study, Colorado, California, CIRM & Longboard! #S10e144
2024-07-02 107
Why is SYNGAP1 so under diagnosed? A reminder. #SRFConf Reg is open! So Many Leaders! #S10e143
2024-06-18 112
NHS in Colorado! Real talk about new therapies. Planning for RAA & the Conf! #S10e142
2024-05-31 147
SRF LT Webinar, MDBR, Therapies, Learning at Conferences. #S10e141
2024-05-20 173
Who will fight for our kids when we aren’t there? SRF and your crew. #S10e140
2024-05-02 115
SRF is a “Get-to…” not a “Have-to..”  Do something & Go big.  #S10e139
2024-04-23 93
Grateful and grieving. SRF is growing with our community, all 1,400 of us! #S10e138
2024-04-04 131
Stoke Praxis Longboard, CHOP & Adult Studies, Hope4theCure, Sprint4Syngap, & Social Matters #S10e137
2024-03-26 135
SYNGAP1 Ciitizen Paper is out!  UCB Survey.  UCSF is discovering SYNGAP.  #Sprint4SYNGAP 2024 is on!  Fitter at the WH. #S10e136
2024-03-16 104
#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great, year, get some #RareBrewCoffee! #S10e135
2024-03-04 140
A very important questionnaire. Repurposing update & ethics. Grant shaping in progress! #S10e134
2024-02-24 223
What is this SYNGAP1 illness / disease / syndrome / NDD / DEE / MRD5 / NSID actually called?  #S10e133
2024-02-13 136
Congratulations to Encoded, Jaguar, Aparito and what will we count? How will we know these therapies are working? #S10e132
2024-02-07 133
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