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Dear Family, Friends and Supporters of SLC6A1 Connect: In honor of Rare Disease Day (Week?) 2023, we are sharing this trailer for a new documentary, “Too Rare to Care,” by the fierce Rare Disease mother and talented producer, Lainey Moseley. The documentary features our own superhero mom Amber Freed, who has dedicated her entire life…
Maxwell was newly diagnosed with SLC6A1 and no doctor knew anything about it. More disheartening, no doctor wanted to learn. I was feverishly reading anything I could get my hands on that could help my innocent little baby. I was full of ideas and hope for an appointment with a neurologist, eagerly sitting down with pages…
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 without short hair and a…
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 with a developing baby. Gone…
In lieu of gifts, she preferred donations to help Maxwell.