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A Note of Gratitude and Clarity

The 16p11.2 Genetic Foundation is a parent‑run, independent patient advocacy organization. We are not part of Simons Searchlight or the Simons Foundation. We share this page because Simons Searchlight has helped move the entire rare genetic neurodevelopmental disorder field forward, including the 16p11.2 community.

We are deeply grateful to Jim and Marilyn Simons, who founded the Simons Foundation in 1994 with a long‑term commitment to basic science. Their vision, and the work of the Simons Foundation Autism Research Initiative (SFARI), has improved care by accelerating research into genetic causes of neurodevelopmental disorders and by building shared resources for the scientific community.

Simons Searchlight has been collecting longitudinal natural history and research registry data for the 16p communities for more than 15 years and is committed to continuing that work. The 16p11.2 Genetic Foundation partners with Simons Searchlight to help support recruitment, retention, and engagement through outreach campaigns and community awareness efforts.

Jim and Marilyn headshot

Credit: Michael Lisnet/Simons Foundation

A Short History of Simons

Simons Searchlight is an international research program funded by the Simons Foundation through the Simons Foundation Autism Research Initiative (SFARI). It began in 2010 as the Simons Variation in Individuals Project (Simons VIP), with an initial focus on individuals and families with 16p11.2 deletion and duplication, at a time when little was known about the natural history of these genetic variants.

Over time, the program evolved and was renamed Simons Searchlight to reflect its core goal: collecting high‑quality, standardized natural history data across development and adulthood to help researchers understand genotype‑first neurodevelopmental conditions. Today, Searchlight includes many genes and copy number variants and operates as a long‑term partnership among families, clinicians, and researchers, with SFARI stewarding open, responsible access to de‑identified data and research-ready biospecimens.

Simons Searchlight Logo

How Families Can Contribute to Research Together

When families participate, the registry becomes stronger and more useful.

Ways families can make research possible and more robust for our children:

  • Join Simons Searchlight as a participant by enrolling at https://www.simonssearchlight.org and completing consent and baseline surveys
  • Contribute longitudinal data by keeping medical, developmental, and behavioral information up to date through annual questionnaires
  • Consider donating a blood sample, if eligible and comfortable, to enable creation of research resources such as cell lines and DNA
  • Invite others in your genetic community to participate, strengthening the data needed to answer the questions that matter most to families

Data and Biospecimens Available for Research

Simons Searchlight collects information over time so researchers can see patterns and change across childhood and adulthood. This includes family, medical, developmental, and behavioral information gathered through surveys and follow‑ups.

Just as important, SFARI helps make these resources available to qualified researchers through SFARI Base, a centralized portal for autism and related neurodevelopmental research data and biospecimens.

Through SFARI Base, approved researchers may request de‑identified data and, for some participants, biospecimens. SFARI and Simons Searchlight describe available biospecimens such as whole blood DNA, lymphoblastoid cell lines (LCLs), and induced pluripotent stem cells (iPSCs).

These resources are stewarded and distributed based on participant consent through the SFARI Data and Biospecimen Repository (SDBR).

Privacy and de‑identified data

Simons Searchlight explains that information shared with approved users is de‑identified, meaning personal identifiers such as name and address are removed from shared datasets. The program describes following federal privacy and security guidelines, including HIPAA and FISMA.