Please help join in the fight against SLC6A1 Neurodevelopmental Disorder.

SLC6A1 is an extremely rare neurodevelopmental disorder causing severe movement and speech disorders, developmental delays (all areas), low tone, autism spectrum disorder, and epilepsy among others.

In October of this 2022, our daughter Haley, through genetic testing was diagnosed with this rare brain disease. In fact it is so rare, it is known only by the gene that is affected, SLC6A1.

From the very first few months of Haley’s life we suspected her difficulties were abnormal. Learning new skills was extremely hard for her and her development was very delayed. She also had a variety of abnormal movements which we now understand have been seizures all along. Haley is the sweetest girl, our absolute joy. She is naturally loving, good at sharing, and the best big sister. It’s hard to watch her struggle with things such as balance, speech, vision, body awareness/depth perception and feeding herself. Focusing and completing pretty much any simple task is difficult for her due to eyelid seizures, which happen hundreds of times per day. Our journey with Haley has brought us to some low moments, but thanks to an incredible SLC6A1 parent-led nonprofit, there is hope for Haley.

SLC6A1 Connect is an amazing nonprofit organization run by dedicated SLC6A1 families. It was actually formed just a few years ago by Amber Freed, a mom of a SLC6A1 child. She is a selfless, force of nature and fighter who is 100% dedicated to finding a cure for these kids. Through your donations, they are funding gene therapy, stem cell, and med repurposing research in order to ensure that Haley, and others have a brighter future.

Thank you for your support, and for following along!

-Matthew & Emily Haus