SLC6A1 families from Kansas City, Iowa, New York City, Belgium, and the Netherlands all headed to Dallas to visit us!  We had some belly laughs and created unforgettable memories.  We all share a bond only understood by fellow parents and each other’s presence is comforting.  The strength, perseverance, and resilience of each family is remarkable.

The University of Texas Southwestern hosted a group of SLC6A1 parents for a VIP tour of the gene therapy lab and even met our lab mice!  Kimberly Fry, Whitney Feldman, and I were on kid duty so we couldn’t go this time. The crew then had dinner with our wonderful SLC6A1 expert, Dr. Kim Goodspeed, and other lovely staff that work hard on gathering clinical data on the disease.  Matt who so kindly led the tour has pictures of all of our SLC6A1 kids framed and taped up at his desk.   Isn’t that amazing?  He works for more than 40 hours a week to help our kids and is invested as though he were working to save his own child.  It was truly moving. 

You all invest so much of your love, prayers, thoughts, kindness, generosity, and money into helping Maxwell and every other child with SLC6A1.  I hope these few pictures and this post helps you feel the sense of hope and community you are creating and how those donations are making all of this possible.  We’ll have some really amazing, tear-inducing scientific updates to share soon but for now, we can confidently say the end is near.  That light at the end of the tunnel is getting closer and brighter and it’s truly the result of a village.  A village of doctors, scientists, friends, family, and supporters. 

Did we picture spending family spring breaks talking about gene replacement promoters, mice, rats, mini pigs, medications, research, etc.?  No.  BUT, we get to do it with this group and are so lucky to have built these life-long friendships while breaking scientific glass ceilings and giving our kids as well as generations to come the opportunity for long, healthy lives.

Categories: Community

SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.

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