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!
En cuenta regresiva para nuestra primera reunión de familias #Syngap en Colombia 🇨🇴 el próximo 22 de Julio.
5 familias convencidas que unidos nos hacemos mas fuertes! @cureSYNGAP1 #syngapAmericaLatina pic.twitter.com/6VOTE3dbZ4— Vicky Arteaga (@VickyAArteaga) July 7, 2022
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
