SYNGAP1 Global Network (SGN)
@SyngapNetwork
Global #SYNGAP1 @cureSYNGAP1 ๐บ๐ธ๐ฌ๐ง๐ช๐บ @Syngap1A ๐ฆ๐ท @SyngapAus ๐ฆ๐บ @OSyngap1 ๐จ๐ฆ๐ซ๐ท @syngap1Germany ๐ฉ๐ช๐ฆ๐น@syngap1italia ๐ฎ๐น & ๐ช๐ธ๐ฎ๐ณ๐ฏ๐ต๐ธ๐ช๐จ๐ญ
ID:1250912795488641029
http://SyngapGlobal.net 16-04-2020 22:24:02
1,7K Tweets
3,2K Followers
2,6K Following
Listen to the latest #SYNGAP1 0 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 youtube.com/watch?v=uRA72mโฆ #SYNGAP1
It is impossible to convey how much good work the Simons Foundation has done for Autism and NDD research. The legacy of James Harris Simons will continue to change countless lives. On behalf of all SYNGAP1 families we offer our gratitude and sincere condolences. Rest in Peace.
๐ค๐ป New SYNGAP1 #SRFWebinar with Rick Huganir,Johns Hopkins University
๐งฌ SRF - The Roles of Distinct Functions of SynGAP1 in SYNGAP1-Related Disorders
๐ Wednesday, May 15th
๐ 9am PT ๐ 12pm ET ๐ 5pm BST
๐ Syngap.Fund/Rick
#SYNGAP1 #RareDiseaseResearch #Neuroscience #Genetics
Congrats to stxbp1 & Charlene Son Rigby for this exciting pre-clinical news from Capsida Biotherapeutics re CAP-002, a 'first-in-class next-generation intravenous (IV)-administered #genetherapy ' for #STXBP1 . Trials to start in 'first half of 2025.'
#SYNGAP1 nextโ
linkedin.com/posts/graglia_โฆ
Listen to the latest #SYNGAP1 0 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 podbean.com/eas/pb-8rsrb-1โฆ #SYNGAP1
#WarriorWednesday SYNGAP1 Kaia (3 years old) from Fairfield, CAโHer laughter and smile and ability to connect gives us life.โ
Read her story & see more photos at curesyngap1.org/syngap-warriorโฆ
#SRFWW no.202
#SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch #CareAboutRare
#WarriorWednesday SYNGAP1 Phoebe (3 years old) from Washington, DC
โWe couldnโt imagine a brighter light than our girl who fights so hard every day of her life.โ Read her story & see more photos at curesyngap1.org/syngap-warriorโฆ
#SRFWW no.201
#SYNGAP #CareAboutRare #PatientAdvocacy
Listen to the latest #SYNGAP1 0 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at Syngap.fund/10 podbean.com/eas/pb-y45ev-1โฆ
#SYNGAP1
How many people have SYNGAP1?
1Q24 = ๐1,400
Syngap.Fund/Census
๐บ๐ธ401
๐ฌ๐ง125
๐ฉ๐ช114
๐จ๐ณ99
๐ซ๐ท95
๐ณ๐ฑ50
๐ฎ๐น48
๐ช๐ธ47
๐จ๐ฆ40
๐ฆ๐บ38
๐ต๐ฑ35
๐ท๐บ30
๐ง๐ท28
๐ฐ๐ท21
๐ฆ๐ท๐จ๐ญ14
๐ณ๐ด๐ธ๐ช13
๐ฉ๐ฐ12
๐ง๐ช11
๐จ๐ด10
๐ต๐น๐ฏ๐ต9
๐ฎ๐ช๐จ๐ฑ๐ฎ๐ฑ8
๐น๐ท๐ธ๐ฎ7
๐ซ๐ฎ6
๐ฒ๐ฝ๐ท๐ธ5
๐ช๐ช๐ง๐พ๐ฆ๐น๐ฎ๐ณ๐ช๐ฌ๐บ๐ฆ๐จ๐ฟ4
๐ฉ๐ด๐ญ๐บ๐ฌ๐ท๐ฆ๐ช๐ท๐ด3
๐ญ๐ฐ๐ธ๐ท๐ฒ๐ฆ๐ฒ๐พ๐ง๐ฆ๐ธ๐ฐ๐ธ๐ฌ2
๐น๐น๐ฉ๐ฟ๐ป๐ช๐ญ๐ท๐ฝ๐ฐ๐ธ๐ฆ๐ฒ๐จ๐ถ๐ฆ๐ณ๐ฟ๐ฆ๐ฒ๐ฎ๐ท๐ต๐ช๐ฎ๐ธ1
#WarriorWednesday #SYNGAP 1 Hope (4 years old) from Redding, California โHer favorite thing though, is riding in the car.โ Read her story & see more photos at curesyngap1.org/syngap-warriorโฆ
#SRFWW no.200
#SYNGAP #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #Neurology #Genetics
Our friends started a coffee company! I am going into my day with my first Rare Brew Coffee . Excellent! Use the code SRF10 for 10% discount and support SynGAP Research Fund (SRF) while drinking very smooth and fresh coffee!
#WarriorWednesday #SYNGAP 1 Jack (4 years old) from Sandpoint, Idaho โLoves being outside and jumping on the trampoline, swinging on swings and even riding his sisterโs horse with herโ
Read his story & see more photos @ curesyngap1.org/syngap-warriorโฆ
#SRFWW no.199
#SYNGAP #CareAboutRare
How does this #podcast ๐๏ธen #espanol only have 11 reviews?
If you have a iPhone, care about #RareDisease / #SYNGAP1 &
BELIVE that we need to reach out to the Hispanic patient community, then you need to click below & give a 5๏ธโฃโญ๏ธreview!
podcasts.apple.com/us/podcast/cafโฆ
@CureSYNGAP1๐งฌ
Life has a way of leading us to unexpected places and experiences, such as advocating for causes we never imagined we would. Here we are, connecting with and being inspired by countless individuals in the Rare Disease community. SynGAP Research Fund (SRF) EveryLife Foundation Dravet Syndrome Foundation
#WarriorWednesday #SYNGAP 1 Igor (20 months) from Turza ลlฤ
ska Poland
โEveryday he tries with determination to catch up to his peers.โ
Read his story & see more photos at curesyngap1.org/syngap-warriorโฆ
#SRFWW no.198
#SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch