Inspiring Events, Family Video & Important Studies. *Note the CINEMAS TRIAL for Epidiolex – #S10e107
Inspiring Events, Family Video & Important Studies. *Note the CINEMAS TRIAL for Epidiolex – #S10e107
RECENT EVENTS
Paddle Slap video https://www.youtube.com/watch?v=F9SaHPzd5bU
Paddle Slap blog https://www.syngapresearchfund.org/post/syngap-paddle-slap-is-a-thing
Family Video and Fundraiser:
Shaeffer Video https://www.youtube.com/watch?v=Z_dI059yPeM
Shaeffer Fundraiser https://secure.givelively.org/donate/syngap-research-fund-incorporated/support-srf-for-story-s-19th-birthday
SRF in the World:
SRF in Mexico – Our Voice is Getting Louder blog Syngap.Fund/Voice
SRF in Poland – https://twitter.com/beatasyngap1/status/1664996361585197057?s=20
STUDIES
ENDD S1 NHS – Email [email protected] to sign up and please cc [email protected], [email protected] & [email protected] – https://drive.google.com/file/d/1ASUkKQOgjbs9hkJVCJ40N8MbVFH4X9_h/view#
CHOP NHS ENDD Blog: https://Syngap.Fund/CHOPNHS
CORNELL
English https://redcap.link/syngapcaregiversurvey
Spanish https://redcap.ctsc.weill.cornell.edu/redcap_protocols/surveys/?s=MWTW743PHENPPRPY
COMBINEDBrain Biorepository
- STXBP1 Foundation, (July 21st-23rd 2023; 10600 Westminster Blvd, Westminster, CO 80020)
- Yellow Brick Road Project, (July 30th-August 2nd (Ponte Vedra Lodge & Club, 607 Ponte Vedra Blvd, Ponte Vedra Beach, FL, 32082)
CINEMAS STUDY – Mild Intellectual Delay
https://cinemasstudy.com/#right_for_me
PRESS
Axios Fruit Flies article https://www.axios.com/local/salt-lake-city/2023/06/09/fruit-fly-medical-research-university-utah
FUTURE EVENTS
June 21 – Splash for Syngap https://www.syngapresearchfund.org/post/share-your-love-for-someone-with-syngap1-for-splash4syngap
August 26 – Syngap Soiree https://e.givesmart.com/events/wiH
October 7 – Scramble for Syngap https://secure.givelively.org/event/syngap-research-fund-incorporated/scramble-for-syngap-2023
October 21 – SynGAP Research Fund Gala Honoring Caren Leib – https://e.givesmart.com/events/wBy/
October 30-31 – Epilepsy Awareness Day at Disneyland https://epilepsyawarenessday.org/lobby-page/
Nov 30-Dec 1 – SYNGAP1 Conference 2023 hosted by SynGAP Research Fund https://www.syngapresearchfund.org/professionals/syngap1-roundtable-2023-syngap-research-fund
Conference pre-registration link: Syngap.Fund/2023conf
Book hotels ASAP: https://Syngap.Fund/2023hotel
T-shirts https://www.bonfire.com/srf-syngap1-conference-2023/
WEBINARS
Upcoming: June 15 – Quantifying perturbed SYNGAP1 Function Caused by Coding Mutations – Dr. Michael Courtney from Turku in Finland https://www.syngapresearchfund.org/webinars/79-quantifying-perturbed-syngap1-function-caused-by-coding-mutations
– Previous: Therapeutic Strategies for Autism: Targeting Three Levels of the Central Dogma of Molecular Biology – Presented to the SYNGAP1 Community – Lilia Iakoucheva & Derek Hong https://www.syngapresearchfund.org/webinars/78-therapeutic-strategies-for-autism-targeting[…]tral-dogma-of-molecular-biology-with-a-focus-on-syngap1
PODCAST
– Syngap Stories, interviews, see #10 with Dani Williams https://www.syngapresearchfund.org/podcast-episodes/episode-010
Volunteer with SRF! [email protected]
This is a podcast: subscribe to and rate this 10 minute #podcast #SYNGAP10 here
– https://www.syngapresearchfund.org/syngap10-podcast
Apple podcasts:
Episode 107 of #Syngap10 – June 14, 2023
#epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat
