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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 of sheer celebration we will…
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. I wanted to cover my ears and sing so I couldn’t hear the doctor’s words. …
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 my favorite songs is called, “I believe most People are Good.” My blog today is highlighting…
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 Administration to approve the therapy…
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 – SLC6A1 Connect is proud to announce that our founder and CEO, Amber Freed, has been…
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 Maxwell before it is too…
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 state. I tried to be strong the day I resigned from Janus, but I simply…
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, and science and technology. I was nominated this year to receive the reward! I am…
“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 years of IVF, but nothing could have prepared me for the overwhelming joy I felt…
The siblings of kiddos with complex health circumstances can get lost in the shuffle of the attention. Riley James Freed is the unsung hero of our household. She handles every circumstance with a grace most adults can’t comprehend and has endless empathy for her twin brother. It is a daily struggle to make sure this…