Ways we spend money

Our foundation has a unique beginning. Our families met each other through a Facebook group created after receiving a rare diagnosis that had very few resources. More and more families joined as we started pooling clinical data and providing support to one another for the wide range and spectrum of symptoms. We realized something had to be done and creating an identity for this disorder through a nonprofit was the way our hearts were led.

Through your donations, we can fund the research needed to understand this gene mutation, advance clinical and basic knowledge about the syndrome, and bring hope to families with so many unknowns.

Our primary mission statement is to envision a world where those with the stag1 gene mutation are known, valued, and equipped to meet their greatest potential. Be a part of our vision and donate today.