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 – [email protected]”
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
