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…
My husband, Mark Freed, is the unsung hero of our little family. He is a symbol of strength and unconditional love, not just for me and our children, but to everyone around him. On my worst days, he is the Read more…
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 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…
Each year, Global Genes, a leading global rare disease patient advocacy organization, asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease. Nominations are accepted in the areas of advocacy, medical care and treatment, Read more…
“God could not be everywhere, and therefore he made mothers.” -Rudyard Kipling When I woke up this morning, I couldn’t help reflecting on the past few years. Mark and I wanted children so badly that we suffered through 2 Read more…
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