Striving for Mediocrity

Learn to be Thankful for What you Already Have, While you Pursue all that You Want – Jim Rohn          A month ago, I sat in the waiting room as Maxwell finished up his horse therapy session.  Gone are the days where his episodes of jerky, uncontrollable movements could be confused Read more…

The Daily Blast Live

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 would recognize their families on the street and probably ask 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…

The HuffPost

  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 we frantically race to develop a gene replacement therapy for Read more…