THE NEXT FOUR MONTHS WILL COME FAST - GET READY! #S10e71

0. RAREBASE https://www.rarebase.org/

We announced a partnership at year ago, check out #S10e27 https://www.youtube.com/watch?v=r3bS9YepQ4s
Now we are doing phase 2… stay tuned.

 

1. LONGBOARD PHARMA https://www.longboardpharma.com/

 STUDY- https://pacific.researchstudytrial.com/ (Shared in #S10e65 - https://www.youtube.com/watch?v=hSK21-y8fQI) 

 TALK - https://www.youtube.com/watch?v=s7l7wnrEX5E (Link shared in #S10e67 - https://www.youtube.com/watch?v=dVpl1UEBVXA)

2. SEIZURE TRACKER

Watch #S10e70 https://youtu.be/g6R9ejJnYbw
More detail in Webinar64 https://www.syngapresearchfund.org/webinars/64-syngap-study-seizure-tracker 

 

3. WEBINARS

PRAXIS INVITAE - SEPT 8th at 10 PT https://pages.questexinfo.com/invitaereg09082022/?pk=Invitae 

BEN PROSSER - SEPT 29th at 9 PT https://www.syngapresearchfund.org/webinars/targeting-alternative-splicing-of-syngap1-using-antisense-oligonucleotides 

 

4. REGISTRIES: CIITIZEN, SIMONS, RARE-X

CIITIZEN FIRST in US (MEDIAL RECORDS)

Sign up at https://Ciitizen.com/SYNGAP1

Refresh by logging into https://app.ciitizen.com 

Profile update: https://intercom.help/ciitizen-corp/en/articles/6421786-ciitizen-profile-update 

 

SIMONS GLOBALLY (GC INTERVIEWS)

Simons Searchlight participants can be from any country, as long as they speak English, Spanish, French or Dutch.  Click Join Us on https://www.simonssearchlight.org/research/what-we-study/syngap1/ 

 

RARE-X (QUESTIONS)

Sign up: https://syngap1.rare-x.org/ 

Webinar:  https://www.syngapresearchfund.org/webinars/intro-to-rare-xs-syngap1-data-collection-program

 

5. COME TO THE CONFERENCE 

Register: https://Syngap.Fund/Treat

Book a room: Link on the registration page.

 

6.COVID DEE SURVEY 

https://www.surveymonkey.com/r/DEEsCOVID19  

 

7. LOTS OF OTHER EVENTS TOO!

• 3 Weeks: September 12-14 in San Diego https://globalgenes.org/event/rare-patient-advocacy-summit/ 
• 6 Weeks: October 8 in NJ - Caren Leib Gala https://www.syngapresearchfund.org/get-involved/fundraising/caren-leib-gala
• 6 Weeks: October 8 in SC - Scramble for SYNGAP https://www.syngapresearchfund.org/get-involved/fundraising/scramble-for-syngap 
• 11 Weeks: November 12 in GA - Sparks of Hope Gala https://syngap.fund/soiree
• 14 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 71 of #Syngap10 - August 23, 2022 

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