#ShineYourSearchlight ✨ Share your medical history with @SimonsSearchlight! This will help you and researchers get a more accurate picture of what it means to have SLC6A1 over time. All medical history information is shared by completing a survey with the option Read more…
#ShineYourSearchlight ✨ Have you uploaded your genetic lab report to your @SimonsSearchlight dashboard? Researchers need specific details in your genetic lab report to learn more about SLC6A1. No genetic lab report? Their team will do the work to find it Read more…
Dear Family, Friends and Supporters of SLC6A1 Connect, As Rare Disease Day 2023 is upon us, we are still fighting every day for our children to have the best chance they can have at life. We didn’t ask or hope Read more…
Hello again! In continuation of Rare Disease Week, we want to talk specifically about the rare disease that affects our kids and families, SLC6A1 Epileptic Encephalopathy. SLC6A1 epileptic encephalopathy is a rare neurological condition in children that causes seizures, severe movement and speech Read more…
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…