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18:06
2026 | SYNGAP1: Burden, Hope, and Progress
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Right now, families affected by SYNGAP1 are doing everything they can to manage daily seizures, behavioral struggles, and unanswered questions. At Johns Hopkins, scientists believe they are within five years of a treatment. A therapy that targets the source of the disorder, not just the symptoms. But NIH funding cuts are threatening to stop that progress. Learn more about what’s at stake: https://hub.jhu.edu/2025/05/14/rare-genetic-disorders-syngap1/ #ResearchSavesLives | Johns Hopkins Universit
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This time last year Toby could only say 5 words.Due to his rare genetic disorder called Syngap1
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Meet Kai, a six year old from Montgomery County living with SYNGAP1-related disorder (SRD). This is a rare genetic condition that affects his speech, development, and motor skills. Kai experiences frequent seizures-often multiple times an hour.However, he still enjoys playing the guitar, "test-driving" cars with his dad, or making new friends wherever he goes. Kai's family found support at Kennedy Krieger Institute, where specialized care is helping him today. His mom, Jessica, is a dedicated ad
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DSC - RDCRN - NCATS - NIH Press! #AAV in #Cell. SRF at CB. Scramble for SYNGAP1 next week! #S10e184
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A Night of Impact for Cure SYNGAP1 💙 My nephew Greyson was diagnosed with SYNGAP1 at just 20 months old, and it has forever changed our family’s lives. SYNGAP1 is caused by a mutation on the SYNGAP1 gene, leading to a lack of SYNGAP protein, which is essential for proper brain function. This night meant so much to us as we came together to raise money and awareness in hopes of finding a cure. A cure for Greyson would mean the world to our family. It would allow us deeper into his world and help
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nichole_row3
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Here's what to expect at the 🧬 2025 Cure SYNGAP1 Conference 🧬 in Atlanta and why we think you should go 💜💙💚 🗣️ Remember, registration closes on November 1st, just ONE more week left to secure your spot! ✅ Register here today before it's too late! cureSYNGAP1.org/Reg25 #SYNGAP1 #CureSYNGAP1 #CureSYNGAP1Conf | Cure Syngap1
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CURE SYNGAP1 Conference 2025: Family Day Session 4.4 | Surviving Teenage Aggression and Self Injury
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Kai, age 6, has SYNGAP1-related disorder. #RareDisease research helps families like his get support.
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