My Nonprofit Reviews

The dedication and compassion from the stxbp1board members is outstanding. I cannot believe how we have grown in the last 6 years. We are forever grateful for each one of our members. In a world that knows so little about stxbp1 mutation and it's impact on our children..they are a ray of hope. I fully believe they are advancing us toward a cure!

Our story is similar to a lot of stxbp1 families. We knew something wasn't right with our grandson at birth. Doctors dismissed us until finally we got the diagnosis. We were handed one study the doctor found on the internet and they told us reach out to other parents on social media."They know more than we do".
This led us to our extended family...the stxbp1 foundation and all of it's members. We couldn't have survived without them the last 5 1/2 years.
It is unbelievable what a group of determined, loving parents can accomplish. When diagnosed, Jaxson was one of less than 200 people in the world with stxbp1. Our numbers have more than tripled. I suspect there are so many more families that never got the diagnosis. The foundation's goal is to find and support them. Then we WILL find a cure.
I don't know how to thank the foundation for their selfless dedication. All I can say is that we are forever grateful.