About Us

The Profound Autism Alliance is building a network of partners focused on inclusive research and legislative changes to improve the lives of individuals with profound autism. Our mission is to improve their health and connection through inclusive research and focused advocacy that will result in meaningful services and supports.


Founded in 2023, our organization adds a unique perspective to autism research and advocacy. Our founding was inspired and our work is informed by Jack Ursitti, a remarkable young man living with profound autism, who, like many of his peers across the country, struggled to access meaningful care.

Jack had nowhere to turn.

The Profound Autism Alliance was formed to change this situation for Jack and others like him. With the clarity provided through the work of the Lancet Commission, which provided an administrative definition of profound autism, and with research done by the Centers for Disease Control, which found that 1 in 4 autistic people have profound autism, our mission became clear: by building an alliance of professionals, researchers, advocates and families that support inclusive research and focused legislative advocacy, we can change the future for people with profound autism and those who love them.

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Profound Autism Alliance is a 501(c)(3) nonprofit organization operating under EIN 92-0405006.