The Greater Good

2020 has been nothing short of a dumpster fire of a year.  I kept joking that Biblical locusts were about to descend upon the world.  The joke was pretty funny until videos of locusts taking over the Middle East interrupted my nightly celebrity news on Page Six.   But what Read more…

Home Cuts For A Cure

Home Cuts for A Cure

Who Needs a Haircut!?! Especially a Home Cut!?! We have decided to have some fun with our hair while raising awareness for SLC6A1.  I have never laughed so hard in my life with #HomeCutsForACure. Exhibit A: Mark Freed with a Mullet. Everyone that knows Mark well would barely recognize him 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…