This exciting study is open to all Syngapians ages 0+!
Visit cureSYNGAP1.org/ROCHESTER3 for more information!
@cureSYNGAP1 #SYNGAP1
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Corey Baysden
530 posts
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 Beigetreten Temmuz 2021
4.8K Folgt5K Follower
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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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
Pine Knoll Shores, NC 🇺🇸 English
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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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
New York, USA 🇺🇸 English
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.
New York, USA 🇺🇸 English
Corey Baysden retweetet
Where is the best list of public drug repurposing wins for rare monogenic CNS disorders? @ClementYChow @rarebasepbc @omidkarkouti @eperlste @onnofaber @JMGraglia
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So proud of this sweet girl! #syngap1 #AutismAwareness #intellectualdisability #Neurology
@cureSYNGAP1
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Corey Baysden retweetet
NEWS! @julietkknowles of @Stanford_Neuro awarded $1⃣3⃣0⃣,0⃣0⃣0⃣ to study maladaptive myelination 🧠 & epilepsy⚡️ in #SYNGAP1 🧬, testing in SRF supported 🐭 models from @rhuganir.
#collaboration 🤝
👉 @cureSYNGAP1 Grant applications due in 15 days.
eurekalert.org/news-releases/…
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Saylor was able to participate in this study! Great work Dr. Frazier & team
CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3)@cureSYNGAP1
#SYNGAP1 families participated in an eye-tracking study. It's in the press @AJMGEditors! Syngap.Fund/Cog #Research #Autism #GeneticDisorders #Science #Studies
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Corey Baysden retweetet
There is no cure for #SYNGAP1, but SRF and its extensive team of volunteers are working daily toward that goal. Together, we can do great things!
#SYNGAP1Conference2023 #Volunteer
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Corey Baysden retweetet
Today, June 21, is SYNGAP1 Awareness Day!
#SYNGAP1 families need family and friends to form a community of support. SRF needs similar support to help us achieve our ultimate goal of finding a cure. #strongertogether
Syngap.Fund/Donate
syngapresearchfund.org
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Corey Baysden retweetet
Es un honor participar y representar a @cureSYNGAP1 como panelista compartiendo la historia de nuestra hija Amelia y la importancia de las organizaciones de pacientes que logran cambiar el rumbo de la enfermedad.
@cureSYNGAP1 @SMNPediatrica @mexico #Chihuahua #Neurology
Chihuahua, México 🇲🇽 Español
Corey Baysden retweetet
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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Corey Baysden retweetet
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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@JMGraglia @cureSYNGAP1 @curestxbp1 @PennMedicine @ChildrensPhila @Prosser_Lab @EAHellerPhD @IngoHelbig @JillianLMcKee @SydneyStel @charleneson @NolanJoeylynn @SarahRuggieroGC @JulieXXian @SyngapNetwork This little one is excited and thankful as well! 💜🧬 #syngap1
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Fabulous visit to Philadelphia! @cureSYNGAP1 & @curestxbp1 met with the ENDD teams at @PennMedicine & @ChildrensPhila.
ENDD Program is the end of excuses re treating #SYNGAP1 & #STXBP1. The incredible souls in these photos can do this.
We are excited to partner with ENDD.
Philadelphia, PA 🇺🇸 English
So thankful for everyone involved in this venture! 💜💪🧬
Mike Graglia 🌻@JMGraglia
Fabulous visit to Philadelphia! @cureSYNGAP1 & @curestxbp1 met with the ENDD teams at @PennMedicine & @ChildrensPhila. ENDD Program is the end of excuses re treating #SYNGAP1 & #STXBP1. The incredible souls in these photos can do this. We are excited to partner with ENDD.
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