My Nonprofit Reviews

I have had the distinct privilege of working closely with the Cacna1a Foundation over the last 2 years. It is absolutely amazing how they hit the ground running and built the community from the ground up.

The founders and Board consist of a few of the most passionate and highly driven people I have ever known. They are leaders within their patient community supporting families through diagnosis and treatment and encouraging participation in research.

Not only do they work day and night to move their mission forward but also to collaborate within the rare disease community building collaborations and raising the bar for excellence wherever they go.

The work that the Foundation has accomplished is beyond amazing. Our team consists of the most highly driven and passionate humans on earth that live our Mission, Vision and Values every single day. This past summer at the conference, the love and support from the Foundation and the entire community that they touch oozed into each and every detail over the 3 days. Simply remarkable what a group of people can do when they unite and stand up to speak in the same voice!

The STXBP1 Foundation is among the few true collaborative organizations I work with. The board members conduct themselves with the utmost professionalism and highest standard of ethics. Running a similarly sized organization, I know first hand the challenges that non profits face and I turn to the STXBP1 Foundation often for guidance and advice as they are an exemplary group.

This Foundation was built from the ground up by parents of children affected by an SCN2A related disorder. We each live the values of the Foundation every single day.

The FamilieSCN2A Foundation was set up by parents who stood up to fight back against this disease not only for their children, but for all those diagnosed now and who will be in the future. This was not a small undertaking and their work and dedication to the cause spilled out into the broader rare disease space causing a ripple effect of more families standing up to fight back and more foundations forming. We are honored to be part of such a Passion and successful group of individuals.