Take time to grieve & then come back to this community to grow. #s10e67

COMMUNITY 

Two blogs you must read:

- Charlie https://syngap.fund/charlie 
- MDBR https://syngap.fund/unite 

 

Vicky is also building community in LatAm, there is a reunion this weekend!

https://twitter.com/VickyAArteaga/status/1544994120351059969?s=20&t=6f5x8BqfRFR5UyRvFMOc_w 

 

LEARNING

Community is big, think Genetic Epilepsies, Remember the Dravet meeting?  Well now you can go too: https://dravetfoundation.org/events/dsf-conference/ 

- Stoke: https://www.youtube.com/watch?v=xHCYFDSwf-o
- Longboard: https://www.youtube.com/watch?v=s7l7wnrEX5E
- Epigenyx: https://www.youtube.com/watch?v=a-fBOr1W3Dw
- Ingo: https://www.youtube.com/watch?v=JVTnkQCtQNo

Check out this trial: https://pacific.researchstudytrial.com/?utm_source=other&utm_medium=Longboard&utm_campaign=patient_recruitment&r=16 

 

FUNDRAISERS

- MICE: Help us Make 2!  https://syngap.fund/2mice
- BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers

EVENTS

- 8 Weeks: September 12-14 in San Diego - https://globalgenes.org/event/rare-patient-advocacy-summit/ 
- 11 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
- 11 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 
- 16 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
- 19 Weeks: 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 67 of #Syngap10 - July 18, 2022 

#CareAboutRare #Syngap #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GlobalCollaboration