About Us

Home > About Us

Our Story

Our story as a foundation may be relatively new but the passion that drives us is not.

Hand coming out of laptop screen holding a heart
Four hands holding each others wrists to form a circle

Our Team

Our team of volunteer parents has banded together through the shared purpose of seeking better outcomes for their children living with 16p11.2. Together, we seek to advance the mission of the Foundation

Gratitude

The 16p11.2 Genetic Foundation gratefully recognizes the Simons Foundation and Simons Searchlight for advancing research across rare genetic neurodevelopmental conditions, including 16p11.2. Families can strengthen research on 16p11.2 variations by joining the Simons Searchlight registry.

Jim and Marilyn headshot

Credit: Michael Lisnet/Simons Foundation

Plant growing in a container filled with coins

Our Financials

We are dedicated to transparency and ethical stewardship of all funds that we receive. As such, we provide annual reports detailing our finances and the impact of every donation.

Our Quarterly Newsletter

Stay informed by subscribing to our quarterly newsletter where we provide practical, digestible information and guidance for 16p11.2 families.

newsletter wording on table with stethoscope below
Plant growing in a container filled with coins

Contact Us

Want to get in touch? Have questions? Reach out and let us know how we can help!