#ShineYourSearchlight Step 5 – Provide an Optional Blood Sample
#ShineYourSearchlight ? Do you live in the United States? Make sure your genetic variant is part of the @SimonsSearchlight biorepository! It is important to represent yourself and have researchers looking at YOUR specific information! Your blood sample can help in creating future therapies and treatments. Contact coordinator@simonssearchlight.org to learn more. #SLC6A1 View all Participation Steps: bit.ly/ShineYourSearchlightCampaign
How Your Donations Multiply
Why do you see so many fundraising emails and posts for SLC6A1 Connect? Where does all this money go? I have wondered this since first talking with SLC6A1 Connect CEO and Founder, Amber Freed, after my daughter’s diagnosis in early November 2020. Amber outlined two parallel tracks the organization was following: Research and Fundraising. I…
#ShineYourSearchlight Step 4 – Complete Surveys
#ShineYourSearchlight ? Have you completed @SimonsSearchlight surveys? They collect information on behavior, communication, motor skills and more. Long-term participation and completing surveys are critically important to the success of research into SLC6A1. Go to your dashboard to complete your surveys: bit.ly/Simons_Searchlight_Dashboard #SLC6A1 View all Participation Steps: bit.ly/ShineYourSearchlightCampaign
#ShineYourSearchlight Step 3 – Share Your Medical History with Simons Searchlight
#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 to speak to a genetic counselor. Go to your dashboard: bit.ly/Simons_Searchlight_Dashboard #SLC6A1 View all Participation Steps: bit.ly/ShineYourSearchlightCampaign
#ShineYourSearchlight Step 2 – Upload Your Genetic Lab Report
#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 for you! Go to your dashboard: bit.ly/Simons_Searchlight_Dashboard #SLC6A1 View all Participation Steps: bit.ly/ShineYourSearchlightCampaign
Rare Disease Week: Meet the SLC6A1 kids
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 to be here, again. We don’t want to be begging for answers, for money, for…
Rare Disease Week
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 disorders, and intellectual disability. As rare disease parents, we simply cannot accept that nothing can be…
Upcoming Documentary: Too Rare to Care
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…
