I recently shared my story with the national talk show, The Daily Blast Live. I have loved the show for a very long time and actually followed two of their hosts, Sam Schacher and Jeff Schroder on Instagram forever. I Read more…
An adorable little girl named Mila Makovec lives just a half hour away from us in Boulder, Colorado. Mila has giant brown eyes, loves chocolate ice cream and singing along to Frozen. Mila is the type of little girl you Read more…
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 Read more…
The dreaded day we received the news that Maxwell was diagnosed with SLC6A1 was the worst day of my life. Mark and I sat at Children’s Hospital and listened to a never-ending list of things Maxwell would probably never do. Read more…
This has been a sad week for our nation, so now is the perfect time to focus on the beauty that can still be found in this world. In my household, we are obsessed with Luke Bryan’s music, and one of Read more…
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 Read more…
FOR IMMEDIATE RELEASE Contact: Amber Freed, SLC6A1 Connect 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 – Read more…
The link to the article didn’t go well for some folks…click here: Huffington Post Article
The Huffington Post recently devoted time with my family to fully understand our daily struggles as we battle a rare disease to save Maxwell. The journalist and photographer deeply cared about Maxwell and felt our sense of urgency as Read more…
I spent my career in equity analysis and made some very dear friends along the way, most recently at Janus Henderson Investors. When doctors began warning us that Maxwell was not well, I left my career in a frazzled, frantic Read more…