Down Syndrome Association of Greater St. Louis Privacy Policy

The privacy of our members and donors is a top priority. We are committed to protecting the information you give us and we do not share individual data (names, addresses, demographics) without your consent. We never sell or give our mailing lists to other organizations or individuals.

How Do We Use the Information We Collect? When you become a member of DSAGSL, donate to the organization, or request information about our services, we will ask for your name, address and e-mail address, and telephone number. We may also request some demographic information such as gender, age of the individual with Down syndrome, and information about your family. The demographic information (gender, age, etc.) may be used , in the aggregate, for reporting and grant-writing purposes. For example, we may tell a funder that 25% of our members reside in Illinois and that the median age of individuals with DS who attended our Walk in the Park was 12. We do not release individual data for reporting or funding purposes. If you request information or help for a particular individual and give permission, we may share the individual data with a parent support volunteer or another agency that may offer appropriate services.

Communication: From time to time we may send out email messages soliciting your support, prompting a call to action, or alerting you of DSAGSL events. In addition, you may receive communications from us if you have contacted us for information or services.

Donor Privacy: The Down Syndrome Association of Greater St. Louis (DSAGSL) is committed to respecting the privacy of donors. The types of donor information that it collects and maintains are as follows:

  • Contact information: name, address, telephone number and email address
  • Giving information and history
  • Information on events attended, publications received and special requests
    for program information.
  • Information provided by the donor in the form of comments and suggestions.
  • Credit card numbers, banking information, and social security numbers are not stored in our database unless by donor request.

The DSAGSL uses donors’ information to understand their interests in its mission and to update them on the organization’s plans and activities. It is shared with staff, board members, volunteers and consultants only on a “need-to-know” basis. We will not sell, share or trade our donors’ names or personal information with any other entity, nor send mailings to our donors on behalf of other organizations. This policy applies to all information received by DSAGSL, both online and offline, on any platform, as well as any electronic, written, or oral communications. To the extent any donations are processed through a third-party service provider, our donors’ information will only be used for purposes necessary to process the donation. We comply fully with the Donor Bill of Rights.