“I was frustrated… why can’t I get any answers? So, I just took out my phone and googled [SLC6A1], hoping to jump over the doctors, and NO SEARCH RESULTS FOUND.” 

Amber Freed, Mom and CEO of Milestones for Maxwell.

On this episode of Raising Rare, we bring in a guest from the Rare Disease Community. Amber Freed has been recognized as one of the most driven parent advocates in the country. After finally making a very disturbing diagnosis, the doctors said, “We don’t know what it means. We are hoping you will become the expert.” Imagine how hard that would hit you. Not many people would respond as Amber did.

We invited Amber to speak because she and Sanath are kindred spirits, helping each other along the journey. They each bring different skills, mindsets, and experiences to the table and they recognize how they can be stronger together. We think you will find Part 1 of our discussion with Amber very interesting.  

https://slc6a1connect.org/milestones-for-maxwell/