Strength in Struggle: A Journey with Syngap1
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Strength in Struggle: A Journey with Syngap1
1.3K views9 months ago
TikTokjackson.syngap1
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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Right now, families affected by SYNGAP1 are doing everything th…
2K views10 months ago
FacebookJohns Hopkins University
‘His diagnoses read like the a la carte menu at a restaurant. Our lives became an endless stream of acronyms.’: Mom shares 16-year journey to son’s rare SYNGAP1 diagnosis
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Jun 2, 2022
lovewhatmatters.com
Das ist SYNGAP1! Der Grund, warum unsere Tochter Lena so ist, wie sie ist. ---Bitte teilt diesen Beitrag --- Zum Welt-Epilepsie-Tag 2018 zeigen wir, wie epileptische Anfälle beim Syngap Syndrom aussehen können. Wir wollen damit anderen Familien zu einer schnelleren Diagnose verhelfen. #SYNGAP1 #lebenmitsyngap Niemand soll mehr wie wir 12 Jahre auf eine Diagnose warten, warum ein Kind so ist, wie es ist. Nein, es ist kein Aufregerthema. Nein, es betrifft nur "wenige" Menschen. Trotzdem bitte ich
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Das ist SYNGAP1! Der Grund, warum unsere Tochter Lena so ist…
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NIH cuts stalling progress on rare genetic disorders like SynGap1
NIH cuts stalling progress on rare genetic disorders like SynGap1
10 months ago
jhu.edu
SynGap1 is a rare syndrome that causes seizures, developmental delays, hypotonia, and intellectual disability. It is a spectrum disorder and this sweet 22 month old seems to have a fairly mild case. He will, however, need many therapies. Please follow him on IG @greysonrow and support him and his sweet family. #syngap1 #curesyngap #syngap1foundation #greysonrow #syngap1awareness #shiningbright #brightfuture #raresyndrome #lovethisboy #beautifulboy @Syngap1 Foundation @SynGAP Research Fund
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SynGap1 is a rare syndrome that causes seizures, developmental d…
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Bridge the Gap - SYNGAP ERF
Bridge the Gap - SYNGAP ERF
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