A Birthday to Remember

I had planned a massive birthday party for the twins with a music class, Peppa the Pig appearance, lots of decorations and of course, good food.  Unfortunately, COVID19 reset all expectations and plans for the world.  At Some Point You Just Have to Let Go of What You Thought Should Read more…

A New Year

Living with a Rare Disease is like Walking a Tightrope over the Grand Canyon.  Your gaze must stay focused forward on achieving treatment.  You can never look backward or down because you will stumble and fall. In 2019, we stepped out in the midst of our most private heartache to make Read more…

A Day of Celebration

The rare disease world is filled with many high-highs and low-lows with some days being much better than others.  I cling to the happy days when Maxwell learns a new skill, scientists reach a milestone achievement or something wonderfully unexpected happens. Today is one of those happy days… a day Read more…

Today was a Good Day

A Big Win For Maxwell This week marked a major milestone in our fight against SLC6A1. Our dedicated team of scientists produced the gene therapy treatment and are actively treating mice. If all goes as hoped, the mice will show improvement and this data will go before the Federal Drug Read more…

Press Release

FOR IMMEDIATE RELEASE Contact: Amber Freed, SLC6A1 Connect Phone: 303-907-8038 Email: afreed@slc6a1connect.org SLC6A1 Connect Founder and CEO Receives RARE Champion of Hope Award Nomination The Global Genes RARE Champion of Hope Awards honor and recognize true champions for rare disease. DENVER, CO, May 2018 – SLC6A1 Connect is proud to announce that our founder Read more…