YOU CAN HELP PRAXIS TO PREPARE FOR CLINICAL TRIAL READINESS FOR SYNGAP1 IN PARTNERSHIP WITH CIITIZEN & SRF

REFRESH RECORDS COLLECTION 

Go to your providers and see what records were collected and when, if you have been back since then, ask them to recollect.

 

SIGN UP FOR TRACKER SURVEY

If you are signed up for ciitizen, you have an email from “Invitae Research Studies - research-studies@invitae.com”

The subject is “Invitation to participate in Invitae's Ciitizen rare neurological disorders research study”

 

DO IT EVERY DAY FOR 30 DAYS

 

WATCH THE WEBINAR (Number: 64)

FB: https://www.facebook.com/cureSYNGAP1/videos/5755953431123242/

YT: https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker/ 

 

IF YOU HAVEN’T ALREADY, SIGN UP FOR CIITIZEN www.ciitizen.com/syngap1 

 

LEARN ABOUT PRAXIS: https://www.youtube.com/watch?v=Kh7O1bxXsSE 

 

KEY REMINDERS

 

FUNDRAISERS

BOWIE/ID in US syngap.fund/bowie

BOWIE/ID in CANADA syngap.fund/overcome

MICE: Help us Make 2!  https://syngap.fund/2mice

BIRTHDAYS: https://www.facebook.com/cureSYNGAP1/fundraisers 

 

EVENTS

4 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 

8 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala

8 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 

9 Weeks: October 12-15 in OH - Child Neurology Society https://www.childneurologysociety.org/colleagues/network/cns-annual-meeting/ 

13 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree

13 Weeks: November 14-15 in MA - PMC summit titled Personalized Medicine & the Patient

16 Weeks: December 1 & 2 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://syngap.fund/10a

 

Episode 70 of #Syngap10 - August 12, 2022 

 

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