HELP FIGHT FOR LILY'S FUTURE
Together, we can make a real difference for Lily and every child diagnosed with SLC6A1.
LILY'S STORY
Just 2 weeks shy of her 1st birthday, Lily became the youngest child in the world diagnosed with SLC6A1, a rare genetic neurological disorder that causes epilepsy, developmental & intellectual delays, movement disorders, behavioral & psychiatric challenges, and profound medical needs.
Lily is the sweetest, most snuggly girl you will ever meet. To know Lily will have a more difficult life than her big brother Leo is heartbreaking. Our girl is a fighter and we will do everything we can to fight for her future.
SLC6A1 CONNECT
SLC6A1 Connect is a parent-run organization dedicated to funding vital medical research for the SLC6A1 disorder, advancing gene therapy treatment, & connecting families with this diagnosis so that we can all fight together to cure our children.
OUR MISSION
Our mission is simple: cure Lily and every child diagnosed with SLC6A1.
Gene therapy has reached the human clinical trial period, which is HUGE and will one day cure Lily & every SLC6A1 child. However, the only thing standing in the way of the next phase of children to receive treatment is the funding. Every contribution, big or small, can help move this mission forward and make a real impact for every child diagnosed with SLC6A1.
In September of 2025, the first SLC6A1 child, Maxwell, became the first in the world to receive gene therapy, proving that real hope is no longer out of reach.
Now our mission is urgent: we must fund this treatment so more children — including Lily — can access it. Every donation truly matters and will help cure this disease.
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