SYNGAP1 Global Network (SGN)(@SyngapNetwork) 's Twitter Profileg
SYNGAP1 Global Network (SGN)

@SyngapNetwork

Global #SYNGAP1 @cureSYNGAP1 ๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ‡ฌ๐Ÿ‡ง๐Ÿ‡ช๐Ÿ‡บ @Syngap1A ๐Ÿ‡ฆ๐Ÿ‡ท @SyngapAus ๐Ÿ‡ฆ๐Ÿ‡บ @OSyngap1 ๐Ÿ‡จ๐Ÿ‡ฆ๐Ÿ‡ซ๐Ÿ‡ท @syngap1Germany ๐Ÿ‡ฉ๐Ÿ‡ช๐Ÿ‡ฆ๐Ÿ‡น@syngap1italia ๐Ÿ‡ฎ๐Ÿ‡น & ๐Ÿ‡ช๐Ÿ‡ธ๐Ÿ‡ฎ๐Ÿ‡ณ๐Ÿ‡ฏ๐Ÿ‡ต๐Ÿ‡ธ๐Ÿ‡ช๐Ÿ‡จ๐Ÿ‡ญ

ID:1250912795488641029

linkhttp://SyngapGlobal.net calendar_today16-04-2020 22:24:02

1,7K Tweets

3,2K Followers

2,6K Following

SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

Listen to the latest 0 episode with @jmgraglia! What is doing to help SYNGAP1 families this week? Subscribe to the at Syngap.fund/10 youtube.com/watch?v=uRA72mโ€ฆ

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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

The 4th annual SynGAP Research Fund Gala will once again be a of 68-year-old Caren Leib's incredible life!

Join us October 18 to be inspired - tickets, sponsorships, & more - Syngap.Fund/CLG4
Past years' videos - Syngap.Fund/CLG

The 4th annual SynGAP Research Fund Gala will once again be a #Celebration of 68-year-old Caren Leib's incredible life! Join us October 18 to be inspired - tickets, sponsorships, & more - Syngap.Fund/CLG4 Past years' videos - Syngap.Fund/CLG #CLG4 #SYNGAP1 #Gala
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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

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.

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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

๐ŸŽค๐Ÿ’ป New SYNGAP1 with Rick Huganir,Johns Hopkins University

๐Ÿงฌ SRF - The Roles of Distinct Functions of SynGAP1 in SYNGAP1-Related Disorders

๐Ÿ—“ Wednesday, May 15th
๐Ÿ•˜ 9am PT ๐Ÿ•” 12pm ET ๐Ÿ•” 5pm BST
๐Ÿ‘‰ Syngap.Fund/Rick

๐ŸŽค๐Ÿ’ป New SYNGAP1 #SRFWebinar with @rhuganir,@JohnsHopkins ๐Ÿงฌ SRF - The Roles of Distinct Functions of SynGAP1 in SYNGAP1-Related Disorders ๐Ÿ—“ Wednesday, May 15th ๐Ÿ•˜ 9am PT ๐Ÿ•” 12pm ET ๐Ÿ•” 5pm BST ๐Ÿ‘‰ Syngap.Fund/Rick #SYNGAP1 #RareDiseaseResearch #Neuroscience #Genetics
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Mike Graglia ๐ŸŒป(@JMGraglia) 's Twitter Profile Photo

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 ' for . Trials to start in 'first half of 2025.'

nextโ“

linkedin.com/posts/graglia_โ€ฆ

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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

Listen to the latest 0 episode with @jmgraglia! What is doing to help SYNGAP1 families this week? Subscribe to the at Syngap.fund/10 podbean.com/eas/pb-8rsrb-1โ€ฆ

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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

SYNGAP1 Kaia (3 years old) from Fairfield, CAโ€œHer laughter and smile and ability to connect gives us life.โ€
Read her story & see more photos at curesyngap1.org/syngap-warriorโ€ฆ
no.202

#WarriorWednesday SYNGAP1 Kaia (3 years old) from Fairfield, CAโ€œHer laughter and smile and ability to connect gives us life.โ€ Read her story & see more photos at curesyngap1.org/syngap-warriorโ€ฆ #SRFWW no.202 #SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch #CareAboutRare
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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

SYNGAP1 Phoebe (3 years old) from Washington, DC
โ€œWe couldnโ€™t 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-warriorโ€ฆ

no.201

#WarriorWednesday SYNGAP1 Phoebe (3 years old) from Washington, DC โ€œWe couldnโ€™t 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-warriorโ€ฆ #SRFWW no.201 #SYNGAP #CareAboutRare #PatientAdvocacy
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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

Listen to the latest 0 episode with @jmgraglia! What is doing to help SYNGAP1 families this week? Subscribe to the at Syngap.fund/10 podbean.com/eas/pb-y45ev-1โ€ฆ

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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

How many people have SYNGAP1?
1Q24 = ๐ŸŒ1,400
Syngap.Fund/Census
๐Ÿ‡บ๐Ÿ‡ธ401
๐Ÿ‡ฌ๐Ÿ‡ง125
๐Ÿ‡ฉ๐Ÿ‡ช114
๐Ÿ‡จ๐Ÿ‡ณ99
๐Ÿ‡ซ๐Ÿ‡ท95
๐Ÿ‡ณ๐Ÿ‡ฑ50
๐Ÿ‡ฎ๐Ÿ‡น48
๐Ÿ‡ช๐Ÿ‡ธ47
๐Ÿ‡จ๐Ÿ‡ฆ40
๐Ÿ‡ฆ๐Ÿ‡บ38
๐Ÿ‡ต๐Ÿ‡ฑ35
๐Ÿ‡ท๐Ÿ‡บ30
๐Ÿ‡ง๐Ÿ‡ท28
๐Ÿ‡ฐ๐Ÿ‡ท21
๐Ÿ‡ฆ๐Ÿ‡ท๐Ÿ‡จ๐Ÿ‡ญ14
๐Ÿ‡ณ๐Ÿ‡ด๐Ÿ‡ธ๐Ÿ‡ช13
๐Ÿ‡ฉ๐Ÿ‡ฐ12
๐Ÿ‡ง๐Ÿ‡ช11
๐Ÿ‡จ๐Ÿ‡ด10
๐Ÿ‡ต๐Ÿ‡น๐Ÿ‡ฏ๐Ÿ‡ต9
๐Ÿ‡ฎ๐Ÿ‡ช๐Ÿ‡จ๐Ÿ‡ฑ๐Ÿ‡ฎ๐Ÿ‡ฑ8
๐Ÿ‡น๐Ÿ‡ท๐Ÿ‡ธ๐Ÿ‡ฎ7
๐Ÿ‡ซ๐Ÿ‡ฎ6
๐Ÿ‡ฒ๐Ÿ‡ฝ๐Ÿ‡ท๐Ÿ‡ธ5
๐Ÿ‡ช๐Ÿ‡ช๐Ÿ‡ง๐Ÿ‡พ๐Ÿ‡ฆ๐Ÿ‡น๐Ÿ‡ฎ๐Ÿ‡ณ๐Ÿ‡ช๐Ÿ‡ฌ๐Ÿ‡บ๐Ÿ‡ฆ๐Ÿ‡จ๐Ÿ‡ฟ4
๐Ÿ‡ฉ๐Ÿ‡ด๐Ÿ‡ญ๐Ÿ‡บ๐Ÿ‡ฌ๐Ÿ‡ท๐Ÿ‡ฆ๐Ÿ‡ช๐Ÿ‡ท๐Ÿ‡ด3
๐Ÿ‡ญ๐Ÿ‡ฐ๐Ÿ‡ธ๐Ÿ‡ท๐Ÿ‡ฒ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿ‡พ๐Ÿ‡ง๐Ÿ‡ฆ๐Ÿ‡ธ๐Ÿ‡ฐ๐Ÿ‡ธ๐Ÿ‡ฌ2
๐Ÿ‡น๐Ÿ‡น๐Ÿ‡ฉ๐Ÿ‡ฟ๐Ÿ‡ป๐Ÿ‡ช๐Ÿ‡ญ๐Ÿ‡ท๐Ÿ‡ฝ๐Ÿ‡ฐ๐Ÿ‡ธ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿ‡จ๐Ÿ‡ถ๐Ÿ‡ฆ๐Ÿ‡ณ๐Ÿ‡ฟ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿ‡ฎ๐Ÿ‡ท๐Ÿ‡ต๐Ÿ‡ช๐Ÿ‡ฎ๐Ÿ‡ธ1

How many people have SYNGAP1? 1Q24 = ๐ŸŒ1,400 Syngap.Fund/Census ๐Ÿ‡บ๐Ÿ‡ธ401 ๐Ÿ‡ฌ๐Ÿ‡ง125 ๐Ÿ‡ฉ๐Ÿ‡ช114 ๐Ÿ‡จ๐Ÿ‡ณ99 ๐Ÿ‡ซ๐Ÿ‡ท95 ๐Ÿ‡ณ๐Ÿ‡ฑ50 ๐Ÿ‡ฎ๐Ÿ‡น48 ๐Ÿ‡ช๐Ÿ‡ธ47 ๐Ÿ‡จ๐Ÿ‡ฆ40 ๐Ÿ‡ฆ๐Ÿ‡บ38 ๐Ÿ‡ต๐Ÿ‡ฑ35 ๐Ÿ‡ท๐Ÿ‡บ30 ๐Ÿ‡ง๐Ÿ‡ท28 ๐Ÿ‡ฐ๐Ÿ‡ท21 ๐Ÿ‡ฆ๐Ÿ‡ท๐Ÿ‡จ๐Ÿ‡ญ14 ๐Ÿ‡ณ๐Ÿ‡ด๐Ÿ‡ธ๐Ÿ‡ช13 ๐Ÿ‡ฉ๐Ÿ‡ฐ12 ๐Ÿ‡ง๐Ÿ‡ช11 ๐Ÿ‡จ๐Ÿ‡ด10 ๐Ÿ‡ต๐Ÿ‡น๐Ÿ‡ฏ๐Ÿ‡ต9 ๐Ÿ‡ฎ๐Ÿ‡ช๐Ÿ‡จ๐Ÿ‡ฑ๐Ÿ‡ฎ๐Ÿ‡ฑ8 ๐Ÿ‡น๐Ÿ‡ท๐Ÿ‡ธ๐Ÿ‡ฎ7 ๐Ÿ‡ซ๐Ÿ‡ฎ6 ๐Ÿ‡ฒ๐Ÿ‡ฝ๐Ÿ‡ท๐Ÿ‡ธ5 ๐Ÿ‡ช๐Ÿ‡ช๐Ÿ‡ง๐Ÿ‡พ๐Ÿ‡ฆ๐Ÿ‡น๐Ÿ‡ฎ๐Ÿ‡ณ๐Ÿ‡ช๐Ÿ‡ฌ๐Ÿ‡บ๐Ÿ‡ฆ๐Ÿ‡จ๐Ÿ‡ฟ4 ๐Ÿ‡ฉ๐Ÿ‡ด๐Ÿ‡ญ๐Ÿ‡บ๐Ÿ‡ฌ๐Ÿ‡ท๐Ÿ‡ฆ๐Ÿ‡ช๐Ÿ‡ท๐Ÿ‡ด3 ๐Ÿ‡ญ๐Ÿ‡ฐ๐Ÿ‡ธ๐Ÿ‡ท๐Ÿ‡ฒ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿ‡พ๐Ÿ‡ง๐Ÿ‡ฆ๐Ÿ‡ธ๐Ÿ‡ฐ๐Ÿ‡ธ๐Ÿ‡ฌ2 ๐Ÿ‡น๐Ÿ‡น๐Ÿ‡ฉ๐Ÿ‡ฟ๐Ÿ‡ป๐Ÿ‡ช๐Ÿ‡ญ๐Ÿ‡ท๐Ÿ‡ฝ๐Ÿ‡ฐ๐Ÿ‡ธ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿ‡จ๐Ÿ‡ถ๐Ÿ‡ฆ๐Ÿ‡ณ๐Ÿ‡ฟ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿ‡ฎ๐Ÿ‡ท๐Ÿ‡ต๐Ÿ‡ช๐Ÿ‡ฎ๐Ÿ‡ธ1
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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

1 Hope (4 years old) from Redding, California โ€œHer favorite thing though, is riding in the car.โ€ Read her story & see more photos at curesyngap1.org/syngap-warriorโ€ฆ
no.200

#WarriorWednesday #SYNGAP1 Hope (4 years old) from Redding, California โ€œHer favorite thing though, is riding in the car.โ€ Read her story & see more photos at curesyngap1.org/syngap-warriorโ€ฆ #SRFWW no.200 #SYNGAP #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #Neurology #Genetics
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Beata Tarasiuk(@beatasyngap1) 's Twitter Profile Photo

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!

Our friends started a coffee company! I am going into my day with my first @RareBrewCoffee . Excellent! Use the code SRF10 for 10% discount and support @cureSYNGAP1 while drinking very smooth and fresh coffee!
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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

1 Jack (4 years old) from Sandpoint, Idaho โ€œLoves being outside and jumping on the trampoline, swinging on swings and even riding his sisterโ€™s horse with herโ€
Read his story & see more photos @ curesyngap1.org/syngap-warriorโ€ฆ
no.199

#WarriorWednesday #SYNGAP1 Jack (4 years old) from Sandpoint, Idaho โ€œLoves being outside and jumping on the trampoline, swinging on swings and even riding his sisterโ€™s horse with herโ€ Read his story & see more photos @ curesyngap1.org/syngap-warriorโ€ฆ #SRFWW no.199 #SYNGAP #CareAboutRare
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Mike Graglia ๐ŸŒป(@JMGraglia) 's Twitter Profile Photo

How does this ๐ŸŽ™๏ธen only have 11 reviews?

If you have a iPhone, care about / &

BELIVE that we need to reach out to the Hispanic patient community, then you need to click below & give a 5๏ธโƒฃโญ๏ธreview!
podcasts.apple.com/us/podcast/cafโ€ฆ

@CureSYNGAP1๐Ÿงฌ

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Vicky Arteaga(@VickyAArteaga) 's Twitter Profile Photo

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

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. @cureSYNGAP1 @EveryLifeOrg @curedravet
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SynGAP Research Fund (SRF)(@cureSYNGAP1) 's Twitter Profile Photo

1 Igor (20 months) from Turza ลšlฤ…ska Poland
โ€œEveryday he tries with determination to catch up to his peers.โ€
Read his story & see more photos at curesyngap1.org/syngap-warriorโ€ฆ
no.198

#WarriorWednesday #SYNGAP1 Igor (20 months) from Turza ลšlฤ…ska Poland โ€œEveryday he tries with determination to catch up to his peers.โ€ Read his story & see more photos at curesyngap1.org/syngap-warriorโ€ฆ #SRFWW no.198 #SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch
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