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

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