SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders

Grateful for what we have while still striving to #CureSYNGAP1! Wishing you and yours a very #HappyThanksgiving #SYNGAP1

Annie -? #S10e155 https://lnkd.in/gzswWvVg Tuesday, November 26, 2024 Annie passed yesterday #SynGAPAngel https://lnkd.in/g_uXBNbX SRF NEWS Stories just keeps getting better: https://lnkd.in/g9sby5qp New family video, use YouTube auto translate: Juliana Meza https://lnkd.in/gGxj9Req Two trials to consider https://lnkd.in/gYWuHYe8 age 14-25 https://deepdeestudy.com/ list of sites: NJ & FL Two studies we all need to sign up for Sign up for Frazier https://syngap.fund/eye2 https://lnkd.in/gtXZDVbZ Citizen Health https://lnkd.in/g9ee6d6A Conference - Conference is 9 days away! Lineup: Science Day lineup - https://lnkd.in/g_tXeEvh Agendas are up! https://lnkd.in/gJRMSyki Thursday Reception at the Hotel: https://lnkd.in/gvsHN3XT Friday Join us for dinner! https://lnkd.in/gn_hCqMs FUNDRAISING Coast2Coast Challenge $152,592 Syngap.Fund/C2C? Minted Cards - 20% discount, 15% to SRF, code FUNDRAISESYNGAP - https://Syngap.Fund/Minted FUNDRAISE https://syngap.fund/FR? CFC: #33321 https://lnkd.in/gsWT5Ac6 VOLUNTEER SPOTLIGHT: Stephanie Decker https://lnkd.in/gYDzggPw ZOOM BACKGROUND https://lnkd.in/gHeTt5r5 VOLUNTEER? https://lnkd.in/gQPhcAFr SOCIAL MATTERS ?- 1,230 YouTube.? https://lnkd.in/gNhNNPBR? ?- 3,851 LinkedIn.? https://lnkd.in/e4q-SJUR - 11,779 Twitter https://lnkd.in/ghZYYE9n - 47k Insta https://lnkd.in/gXniPPtp - 456 TikTok https://lnkd.in/gGSWenEG NEWLY DIAGNOSED? New families have resources here! https://lnkd.in/gziXH-BP Podcasts, give all of these a five star review! https://lnkd.in/g355G2bT Episode 155 of #Syngap10? #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

The SYNGAP1 community is at a loss as we share the passing of Annie. Please keep her family in your thoughts during this difficult time. As a community, we promise to always fight in your honor, Annie.

"You talk to other Syngap parents - they know, and you just don't feel so alone!" Ep 29 of #SYNGAP1Stories! Available at https://lnkd.in/g9Kg9nrg or wherever you listen to podcasts. #CureSYNGAP1 #Syngap1 #Epilepsy?? #Autism?? #IntellectualDisability?? #RareDisease #SYNGAP1StoriesJack

?? https://lnkd.in/gz2zbGDC to meet Emily, and find out why she and so many others #SupportSRF! "We have made incredible connections and felt massive hope for the future of Hadley and all Syngapians." #SYNGAP1 #SynGAPResearchFund #Volunteers

?Nuevo episodio de podcast! Episodio 22: Sara Jimenez y Su Hijo Diego, El Primer Paciente de SYNGAP1 Diagnosticado en Guatemala https://Syngap.Fund/Café #SYNGAP1 #CaféSYNGAP1 #CureSYNGAP1

We are #Thankful to all the donors to SRF's #Coast2Coast Clinics Challenge to help us #CureSYNGAP1! If you haven't already, it's not to late to join a Squad! Details - https://Syngap.Fund/C2C Donate $1k+ and receive a complimentary 30 oz insulated tumbler! #C2C #SYNGAP1Clinic #GivingTuesday

#SYNGAP1Stories is back! Just in time for the 2024 #SYNGAP1 Conference, new co-host Rainy Schlosser talks with Conference Director Stacey. "I can't just accept 'this is the way it is and there's nothing you can do about it'. Volunteering makes me feel less alone." https://lnkd.in/g9Kg9nrg #SYNGAP1StoriesJack #Epilepsy ?? #Autism ?? #IntellectualDisability ?? #RareDisease #Advocacy #SyngapConf

Cure SYNGAP1 is firing on all cylinders!? 4MTx, C2C and the Conference is almost here!? #S10e154 https://lnkd.in/gQRhVUm3 Friday, November 15, 2024 SRF NEWS Busy week for Mike & Virginie: Citizen Health & Ultragenyx, not Milken. Sign up for Citizen Health https://lnkd.in/g9ee6d6A Growing our name https://lnkd.in/gxiq_mMn Financials updated with 2023 https://lnkd.in/gt55uwgy Thank you Stefanie Decker! Newsletter #41 - https://Syngap.Fund/NL41 - About why we need a cure - quotes from our families We're over 100 volunteer bios on the website! More being added every week! Great work Zoe! https://lnkd.in/gBeGJPrS Cafe SYNGAP1 e24 is up! Gloria Amparo Guzmán Cali, Colombia https://syngap.fund/Cafe 4MTx Announcement and direct impact on pipeline https://lnkd.in/gGrXrcpy https://lnkd.in/g3GPgSVE Speaking of small molecules, get this on Ravicti https://lnkd.in/gTm3yMUW RESEARCH UPDATE There are 306 papers on or related to SYNGAP1 since 1998, but 48 of those are in 2024! https://lnkd.in/g8u33DgF Latest is from Frazier! https://lnkd.in/gFh2TNHX Sign up for Frazier https://syngap.fund/eye2? https://lnkd.in/gtXZDVbZ More Grants at work Science: Key Missense Webinar next week https://lnkd.in/gzeDWJ25 New study at CHOP - Phenotype of the Hispanic SYNGAP1 Family. Details (English or Spanish) at https://lnkd.in/gk9RM_h2 Bower family blog - Camden's trip to CHCO - https://lnkd.in/emMkhQyA Thank you Corey Baysden for getting the Studies so well organized!? https://lnkd.in/gq64vkpT Conference - Conference is 18 days away! Lineup: Science Day lineup - https://lnkd.in/g_tXeEvh Agendas are up! https://lnkd.in/gJRMSyki Thursday Reception at the Hotel: https://lnkd.in/gvsHN3XT Friday Join us for dinner! https://lnkd.in/gn_hCqMs ... VOLUNTEER SPOTLIGHT: Amber Mickler https://lnkd.in/gBnTTgGC? ... Episode 154 of #Syngap10? #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP1

Whose stocking do you need to stuff? Give the perfect gift to help spread awareness among your family and friends. Today is the day - order without delay! https://lnkd.in/gnz4FnWG #SYNGAP1 #SYNGAP1Ornament