Corey Baysden

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Corey Baysden

Corey Baysden

@CoreyBaysden

#RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID

North Carolina, USA 가입일 Temmuz 2021
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Corey Baysden
Corey Baysden@CoreyBaysden·
Wrapped up the 2024 Syngap Research Fund Conference in LA! 🧬💙 Grateful for the amazing family connections made and inspired by the groundbreaking research from top universities and labs worldwide. Hope is stronger than ever! #Syngap1 #RareDisease #HopeForACure @cureSYNGAP1
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Corey Baysden
Corey Baysden@CoreyBaysden·
Today, on #RareDiseaseDay, we honor all affected by conditions like #Syngap1. Since Saylor's dx, our journey has been a mix of challenges & blessings. Let's also recognize the unsung heroes—teachers, caretakers, therapists—who play crucial roles in our journey 💜🧬🙏@cureSYNGAP1
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Corey Baysden@CoreyBaysden·
While we were admitted @WCMpeds brought her toys to play with, water color paints & sent a music therapist to keep her spirits up! 🥰🎶
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Corey Baysden@CoreyBaysden·
Saylor received her 1st dose #Ravicti thanks 2 @DrZachGrinspan @WCMpeds. Leading our 1st #SYNGAP1 drug trial. Ravicti, orig. 4 urea cycle disorders, now explored in preventing seizures and helping cognition. We 😍 this opp. & remain hopeful for 🙌 outcomes! @cureSYNGAP1
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Corey Baysden@CoreyBaysden·
Saylor also had to have a 48hr VEEG. The team @WCMpeds was amazing! They took their time putting on each lead & made sure she was comfortable the entire 2 hrs it took.
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Corey Baysden@CoreyBaysden·
Saylor is excited too!
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Corey Baysden 리트윗함
CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)
CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)@cureSYNGAP1·
SYNGAP1 #WarriorWednesday🧬 Michael (age 2) from📍Vienna, Austria 🇦🇹“He likes slides and swings…” Read his story & see more photos at syngapresearchfund.org/syngap-warrior… #SRFWW no.186 #SYNGAP #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics #Pediatrics #epilepsy #autism #geneticcounseling #curesyngap1
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CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)
CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)@cureSYNGAP1·
Our legal director Kevin Frye and CEO @JMGraglia are @StJude PTNI to learn about Pediatric Translational Neuroscience alongside 3️⃣0️⃣ Patient Advocacy Groups. We are ensuring that #SYNGAP1 is part of the conversation & our patients will have every opportunity for new therapies.
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@cureSYNGAP1 @WCMpeds @DrZachGrinspan @ClementYChow @omidkarkouti @eperlste @onnofaber @JMGraglia