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. Read more…
#ShineYourSearchlight✨ Not enough is known about SLC6A1. Join our search for answers by signing up for #SimonsSearchlight and help us grow our community in 2023. Go to SimonsSearchlight.org to sign up for FREE! #SLC6A1
Hello everyone, In December 2022, SLC6A1 Connect hosted a symposium on the latest trends and research into SLC6A1 disorders. The event preceded the annual American Epilepsy Society (AES) Conference. Both events occurred in Nashville, Tennessee. SLC6A1 researchers and families of Read more…
SLC6A1 families from Kansas City, Iowa, New York City, Belgium, and the Netherlands all headed to Dallas to visit us! We had some belly laughs and created unforgettable memories. We all share a bond only understood by fellow parents and Read more…
Today was too good not to share!!! I had a meeting with my congressional representative, the honorable Van Taylor to discuss rare disease advocacy at the state and national level. Rare diseases are considered too rare to care by pharma, Read more…
My birthday was Saturday which in rare disease world equates to the obligatory fundraiser. This year, I am celebrating a success along with our faithful donors that have made this moment possible. Last December, many gene therapy projects were mostly Read more…
We’re so excited to share a big win for our community. This is happening because of our selfless donors that walk alongside of us every single day. In thanks to our support, SLC6A1 Connect is funding a clinical trial to Read more…
I was exactly 34 weeks pregnant, and it was the day of my maternity photoshoot. Our sweet photographer said 34 weeks is the perfect time because women are glowing, but that is not the case when you are 5’2, 100 Read more…
Mila was born 10 years ago in Boulder, Colorado to an adoring mother named Julia Vitarello. Beautiful and energetic from the start, Mila was a little girl whose personality drew others in naturally. Even as a three-year-old, she used her Read more…
Our small, closely knit, rare disease community lost one of our heroes. I have contemplated sharing this information because frankly, it makes it hard to breathe. When I saw the other mother’s post, my mind nearly imploded with grief and Read more…