#RareOnTheHill and #SRFboard in DC were epic. It’s going to be a great year. Get some #RareBrewCoffee! #S10e135 https://lnkd.in/geSUyvza DC was epic, come next year! - Board Meeting and Leadership Team. - Rare on the Hill - Nancy, John, Vicky, Kathryn, Marta, Suzanne, Jess Johnson! https://lnkd.in/g5zWMkM4 - Last week of Feb, don’t miss it. #RareBrewCoffee has launched! https://lnkd.in/gjAECAXz use code SRF10 Reflecting on the latest Rick Huganir paper - This was in part supported (as acknowledged) by our first grant, 5 years ago we funded 10x that last year. - We are not a Rasopathy! https://lnkd.in/g9ji_8mP - We need to have Prof. Huganir do a webinar! #DEI #SyngapWhileBlack Nice work Petersen family https://lnkd.in/gmmTUCxy State Coordinators and Advocates Sign up - We’re looking for state representatives and state advocates - fill out this form if you’re interested - https://lnkd.in/gZ_Wc9Mq - Syngap1 Stories Episode 27 - guest host Jessica Johnson with guest Jackie Kancir - released 3/2. Syngap.Fund/Stories We still do warriors, 198 is from Poland! - https://lnkd.in/gNc-bvRE - https://lnkd.in/g2eeGVRq - Are you are warrior yet? https://lnkd.in/gkPTmcg9 Repurposing - Thought for the week - When you try a new molecule, any new molecule, take notes, videos and pictures. - IF a drug increases cognition, expect frustration, at first. - Make sure you watch episode 134, even if it’s long because I really go deep on repurposing. https://lnkd.in/gfyMRw6e Notes, all on Youtube, make sure you subscribe there - 935 today let’s get to 1,000 https://lnkd.in/gNhNNPBR List of repurposed drugs: Ravicti® (glycerol phenylbutyrate) - https://lnkd.in/gRwUC4ng Butyrate - https://lnkd.in/g9cCp8tj NAL - https://lnkd.in/gwFqZZwz Pamelor® (nortriptyline) - https://lnkd.in/gQkwW_hT Fycompa® (perampanel) - https://lnkd.in/g4Djub2P Siblings - Order a kit, thank you UCB @UCBUSA https://lnkd.in/g7h4ua7W Ed’s notes: - Aaron Harding guest on DeafBlind Potter Podcast - "Navigating Life's Challenges: A Journey with SynGAP - An Interview with Aaron Harding" - ...... Podcasts, give all of these a five star review! SRF Channel - https://lnkd.in/g355G2bT Episode 135 of #Syngap10 - March 3, 2024 #epilepsy #autism #intellectualdisability #id #anxiety #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #GeneChat #F78A1 #CureSYNGAP
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