My Nonprofit Reviews

I am a parent of a daughter with SLC6A1. This past year I volunteered with SLC6A1 Connect, helping out with recruiting for natural history studies, connecting with parents of newly diagnosed children, representing the organization in advocacy meetings, and sharing with SLC6A1 parents what I’ve learned about the organization’s mission and the extensive work being done by research scientists, clinicians, advocates and parents to cure this disease and improve the lives of SLC6A1 patients.

I learned that donations to SLC6A1 Connect are used to fund seed grants to researchers with promising treatments for SLC6A1. For example, A $125,000 seed grant from SLC6A1 Connect was awarded to Dr. Katty Kang’s lab at Vanderbilt University in 2019 to further her research into SLC6A1 and treatment options using phenylbutyrate. This seed grant enabled Dr. Kang to kickstart her SLC6A1-targeted research and ultimately receive a 5-year $2.2 million grant from the National Institute of Neurological Disorders and Stroke (NINDS) branch of the NIH. R01 grants are extremely competitive and difficult to obtain. Only 50% of all submitted grant applications are discussed and then about 1 out of 5 receive funding. Dr. Kang, with the help and advocacy of SLC6A1 Connect, also received funding from 3 major biotechnology companies. As a result, our $125,000 grew to more than $3 million in funding. This means that every dollar donated to SLC6A1 has the potential to generate up to 24 dollars or more for targeted research!

The non-stop work of SLC6A1 Connect has put a phenylbutyrate treatment option on the table that has the potential to greatly improve the lives of our children. We will not stop until we have several viable treatments that can free our kids from their seizures and restore their abilities to learn, communicate and self-regulate. After seeing what this organization has accomplished and how determined the members are to succeed, I can wholeheartedly say they deserve a 5-star rating.