Save Children from a Debilitating Rare Disease
SLC6A1 is a rare neurological disease in small children that causes seizures, severe movement and speech disorders and intellectual disability. SLC6A1 Connect is a patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1. Our focus is to raise awareness and fundraising to advance scientific research that will ultimately result in a cure.
We were making great strides in a gene replacement therapy cure in hopes to have a clinical trial in late 2020. With the disruption that COVID19 has caused to both our research and fundraising we are now uncertain how long this will be delayed, but no longer feel a trial is possible in 2020. This is devasting as many of our kids are are only progressively becoming more and more delayed without thier cruicial therapies as well as experiencing daily seizures while we wait.
Imagine the lives they could lead, and envision the impact that they could have if only they were cured of this curable disease. The possibilities are endless.
Every donation made on May 5, #GivingTuesdayNow, will be matched TWICE, once by PayPal and additionally by a generous donor, up to $20,000.
Please help us maximize this opportunity and TRIPLE your impact for our kids.