SLC6A1 is a rare neurological condition in small children that causes seizures, severe movement and speech disorders and intellectual disability.
SLC6A1 Connect is a patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1.
Our focus is to raise awareness and fundraising to advance scientific research that will ultimately result in a cure.
Our friends at @SimonsSearchlight created a new quarterly report with updated information shared by our families and feature a special spotlight on developmental growth charts, using insights based on the Vineland Adaptive Behavior Scales (Vineland-3) data, Read more…
Last July Amber asked me to help launch the Ciitizen partnership with SLC6A1 to create a new digital Natural History Study. Ciitizen was founded with a mission to let patients control their own health records Read more…
#ShineYourSearchlight ✨ Continue your @SimonsSearchlight journey and help our community grow! Your involvement can lead to important insights so current and future families can find hope for their family. The more data we collect over Read more…
Feel free to contact me day or night.
