Author: Lindsay Randall of Arthur’s Quest, United Kingdom I was very excited to receive a link from our wonderful Portuguese mother Julia Ferrer, for an Orphan Drug Conference called REPO4EU. I had never heard of it before, but thought this Read more…
Increasing diagnoses will help us cure SLC6A1 SLC6A1 and other genetic brain disorders are underdiagnosed due to barriers to genetic testing. Conditions that are considered ‘rare’ struggle to attract medical research. A great deal of medical research is funded by Read more…
Our friends at @SimonsSearchlight created a new quarterly report with updated information shared by our families and a special spotlight on behavioral and emotional concerns in children using results from the Child Behavior Checklist (CBCL). The CBCL includes questions about anxiety, Read more…
We are excited to share the following blog post from Lindsay Randall. Lindsay is the founder of Arthur’s Quest, our partner SLC6A1 community in the United Kingdom. On October 10th, my daughter’s 4th Birthday, I attended the 4th Annual MarketsandMarkets Read more…
by Lindsay Dilley, founder of Arthur’s Quest and SLC6A1 Connect UK After a disappointing rejection of our submission to the International League Against Epilepsy (ILAE) for a special interest session on SLC6A1, I was delighted to hear that the advocates Read more…
Our friends at @SimonsSearchlight created a new quarterly report with updated information shared by our families and feature a special spotlight on developmental growth charts, using insights based on the Vineland Adaptive Behavior Scales (Vineland-3) data, which show skills at different Read more…
Last July Amber asked me to help launch the Ciitizen partnership with SLC6A1 to create a new digital Natural History Study. Ciitizen was founded with a mission to let patients control their own health records to aid in their own Read more…
#ShineYourSearchlight ✨ Continue your @SimonsSearchlight journey and help our community grow! Your involvement can lead to important insights so current and future families can find hope for their family. The more data we collect over time, the better picture we Read more…
#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 Read more…
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 Read more…