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We are learning from the best - A read out from #DSFinDFW Conference. #S10e65

We are learning from the best - A read out from #DSFinDFW Conference. #S10e65

FromSynGAP10 weekly 10 minute updates on SYNGAP1


We are learning from the best - A read out from #DSFinDFW Conference. #S10e65

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
13 minutes
Released:
Jun 28, 2022
Format:
Podcast episode

Description

WEBINARS
- Susan on Fundraising: https://syngap.fund/susan 
- Go to the CIITIZEN Webinar tomorrow (June 29th @ 11:30 ET) https://syngap.fund/virginie 
- Sign up! https://www.ciitizen.com/syngap1/ 
 
FUNDRAISERS
 - SHARE & SUPPORT by Thursday, all funds matched in June! https://www.facebook.com/donate/435907651714018/336149052023430/ 
 - MICE: Help us Make 2!  https://syngap.fund/2mice
 
DRAVET WAS AMAZING
- Mike’s Tweet-threads about the event
  - Day 1 https://twitter.com/JMGraglia/status/1540061343813885952
  - Day 2 https://twitter.com/JMGraglia/status/1540339186187788289  
  - Day 3 https://twitter.com/JMGraglia/status/1540709603406540803 
 
- DSF https://dravetfoundation.org/ 
- Conference https://dravetfoundation.org/events/dsf-conference/  
- Dr. Andrade / AGE  - https://www.uhnresearch.ca/researcher/danielle-andrade  
 
- Dr. Perry & Dr. Papadelis at Cook Children’s
  -  Article about Perry/Cook https://www.checkupnewsroom.com/rare-disease-day-carter--many-patients-treated-cook-childrens-syngap-rare-disease-seizures/  
  - Dr. Perry on the Twitter: https://twitter.com/TheNotoriousEEG
  - Link with the Dr. Papadelis study: https://www.cookchildrens.org/services/neurosciences-research/funding/ 
 
- Longboard
  - https://www.longboardpharma.com/
  - https://pacific.researchstudytrial.com/ 
 
- Epigenyx
  - https://www.epygenix.com/ 
  - Baraban Lab https://barabanlab.ucsf.edu/ 
  - Clemizole Tweet https://twitter.com/JMGraglia/status/1540712480975884288 
 
EVENTS
September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ 
October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 
November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
December 1 in TN - Syngap Science Meeting - https://syngap.fund/treat
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 65 of #Syngap10 - June 28, 2022
#CareAboutRare #CureDravet #DSFinDFW #Ciitizen #LongboardPharma #Epigenyx #CookChildrens #F78A1 #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration 
Released:
Jun 28, 2022
Format:
Podcast episode

Titles in the series (100)

Over 900 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/