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 Read more…

A Big Win

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 repurpose an FDA approved drug named Ravicti made by Horizon Read more…

Sorrow

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 fear. I tried to push it out of mind so Read more…

The Greater Good

2020 has been nothing short of a dumpster fire of a year.  I kept joking that Biblical locusts were about to descend upon the world.  The joke was pretty funny until videos of locusts taking over the Middle East interrupted my nightly celebrity news on Page Six.   But what Read more…