Charter for Simons Searchlight Community Advisory Committee

Simon Searchlight’s Mission

Simons Searchlight is a partnership of leading scientists, doctors and families, determined to accelerate the science of genetic changes related to autism and other neurodevelopmental disorders.

Purpose of the Community Advisory Committee

The purpose of the Community Advisory Committee (CAC) is to advise and guide research and community activities on behalf of all Simons Searchlight participants and gene groups.


    • The CAC will have up to 20 members.
    • Members must be at least 18 years old.
    • The Simons Searchlight study team will review membership to be sure that the CAC is representative of the Searchlight community.
    • Members will be invited to serve for two-year terms and may resign at any time.
    • The participation of members will be reviewed annually and some members may be rotated off of the council if appropriate.
    • New members may be added periodically.

At this time, member must be fluent in English due to the structure of the conference calls and method of disseminating surveys and other information.


  • Donate approximately 10 hours per year to CAC-related activities. Members may choose from a number of activities.
  • Work with Simons Searchlight staff to provide feedback on the registry platform, help prioritize and test research surveys, participate in online focus groups, take informal surveys and polls, and attend online CAC meetings.
  • Share the outcome of the CAC decisions with their larger family gene group, when applicable.
  • Staff will ensure that activities are designed so that members can participate when and where it is most convenient.


A general online conference call will occur at least twice a year. These meetings will be recorded for those who cannot attend at the time of the call. Staff will convene ad hoc meetings with subgroups of the CAC as needed. Staff will provide all members with an annual report that includes information about how your CAC participation has contributed to Simons Searchlight.


Active participants will receive a gift card as a thank you during their term of service.


Members of the CAC shall not be held liable for any actions taken by them in their capacities as members.