Last modified: March 5, 2025
Visual Snow Initiative, Inc. (“VSI” or ”We”) respects your privacy and are committed to protecting it through our compliance with this Privacy Policy (the, “Privacy Policy”). This Privacy Policy describes the types of information we may collect from you or that you may provide when you visit the website visualsnowinitiative.org/ and vsikids.org/ (our “Website”) and our practices for collecting, using, maintaining, protecting, and disclosing that information.
Included Collection. This Privacy Policy applies to information we collect on this Website; in email or any other electronic communications between you and this Website; or when you interact with our applications on third-party websites and services, if those applications or advertising include links to this Privacy Policy.
Excluded Collection. This Privacy Policy does not apply to information collected by us, offline or through any other means, including on any other website operated by VSI or any third party (including our affiliates and subsidiaries); or by any third party, including through any application, advertising, or other content that may link to or be accessible from or on the Website.
Please read this Privacy Policy carefully to understand our policies and practices regarding your information and how we will treat it. By accessing or using this Website, you agree to this Privacy Policy. If you do not agree to this Privacy Policy, please discontinue your use of this Website. This Privacy Policy may change from time to time (see Changes to Our Privacy Policy). Your continued use of this Website after we make changes is deemed to be acceptance of those changes, so please check the Privacy Policy periodically for updates.
The website visualsnowinitiative.org/ is not intended for children under 13 years of age. No one under age 13 may provide any personal information to or on the Website. We do not knowingly collect personal information from children under 13. If you are under 13, do not use or provide any information on this Website or on or through any of its features on the Website, make any donations through the Website, use any of the interactive or public comment features of this Website or provide any information about yourself to us, including your name, address, telephone number, email address, or any screen name or user name you may use. If we learn we have collected or received personal information from a child under 13 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 13, please contact us at info@visualsnowinitiative.org.
The website vsikids.org/ may be used by children under the age of 13 (“children”). The Children’s Online Privacy Protection Act of 1998 and its rules (collectively, “COPPA”) require us to inform parents and legal guardians (as used in this section, “Parents”) about our practices for collecting, using, and disclosing personal information from children. It also requires us to obtain verifiable consent from a child’s parent for certain collection, use, and disclosure of the child’s personal information. This section, as well as the VSI Kids Privacy Addendum below, only apply to children and supplement the other provisions of this Privacy Policy. Only the other provisions of this Privacy Policy apply to teens and adults.
Types of Information. We collect several types of information from and about users of our Website, including:
We primarily collect this information either directly from you when you provide it to us or automatically as you navigate through the site. Information collected automatically may include usage details, IP addresses, geolocation, and information collected through cookies, web beacons, or other tracking technologies. We may also collect information about you from third parties, including but not limited to our business partners.
Information You Provide to Us. The information we collect on or through our Website may include:
You also may provide information to be published or displayed (hereinafter, “posted”) on public areas of the Website or transmitted to other users of the Website or third parties (collectively, “User Contributions”). Your User Contributions are posted on and transmitted to others at your own risk. Please be aware that no security measures are perfect or impenetrable. Additionally, we cannot control the actions of other users of the Website with whom you may choose to share your User Contributions. Therefore, we cannot and do not guarantee that your User Contributions will not be viewed by unauthorized persons.
Information We Collect Automatically. We may automatically collect information about you when you visit the Web Site or use our services. We may log data or use tracking technologies such as cookies and web beacons to collect this information about you. This information includes technical information about your device and network access, including: your IP address, browser type and version, browser plug-in types and versions, operating system and platform; device-specific information, such as time zone setting and mobile network information (including location information); and other information about your visit, such as the webpages you view, links you click, language preferences, websites you visited before coming to the Web Site, page response times, download errors, page interaction information (such as lengths of visits to certain pages, scrolling, clicks and mouse-overs), or your destination when you leave the Web Site. We may use Personal Data that we collect about you to:
Automatic Data Collection Technologies. The technologies we use for this automatic data collection may include:
Cookies (or browser cookies). A cookie is a small file placed on the hard drive of your computer. You may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting you may be unable to access certain parts of our Website. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to our Website.
Locally Stored Objects. Certain features of our Website may use locally stored objects to collect and store information about your preferences and navigation to, from, and on our Website. Locally stored objects may or may not be managed by the same browser settings as are used for browser cookies. For information about managing your privacy and security settings for locally stored objects, see Choices About How We Use and Disclose Your Information.
Web Beacons. Pages of our the Website and our e-mails may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags, and single-pixel gifs) that permit VSI, for example, to count users who have visited those pages or opened an email and for other related website statistics (for example, recording the popularity of certain website content and verifying system and server integrity).
Some content or applications on the Website are served by third-parties, including content providers, and application providers. These third parties may use cookies alone or in conjunction with web beacons or other tracking technologies to collect information about you when you use our website. The information they collect may be associated with your personal information or they may collect information, including personal information, about your online activities over time and across different websites and other online services.
Google Analytics is a web analytics service offered by Google that tracks and reports website traffic. Google uses the data collected to track and monitor the use of our service. This data is shared with other Google services. Google may use the collected data to contextualize and personalize the ads of its own advertising network. For more information on the privacy practices of Google, please visit the Google Privacy Terms web page. We also encourage you to review the Google’s policy for safeguarding your data.
We do not control these third parties’ tracking technologies or how they may be used. If you have any questions about targeted content, you should contact the responsible provider directly.
Principal Uses. We use information that we collect about you or that you provide to us, including any personal information:
Non-Personal Information. We may disclose aggregated information or other information that does not identify any individual without restriction.
Personal Information. We may disclose personal information that we collect, or you provide as described in this Privacy Policy:
Other Disclosures. We may also disclose your personal information:
To comply with any court order, law, or legal process, including to respond to any government or regulatory request.
To enforce or apply our terms of use {INSERT AS LINK TO WEBSITE’S TERMS OF USE} and other agreements.
If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of Visual Snow Initiative, our partners, or others.
We strive to provide you with choices regarding the personal information you provide to us. We have created mechanisms to provide you with the following control over your information:
Tracking Technologies and Advertising. You can set your browser to refuse all or some browser cookies, or to alert you when cookies are being sent. If you disable or refuse cookies, please note that some parts of this site may become inaccessible or not function properly.
Nevada Resident Opt-Out. Nevada residents who wish to exercise their sale opt-out rights under Nevada Revised Statutes Chapter 603A may submit a request to this designated address: info@visualsnowinitiative.org. Please know we do not currently sell data triggering that statute’s opt-out requirements.
You may send us an email at info@visualsnowinitiative.org to request access to, correct or delete any personal information that you have provided to us. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect.
California Civil Code Section § 1798.83 permits users of our Website that are California residents to request certain information regarding our disclosure of personal information to third parties for their direct marketing purposes. To make such a request, please send an email to info@visualsnowinitiative.org.
We have implemented measures designed to secure your personal information from accidental loss and from unauthorized access, use, alteration, and disclosure. All information you provide to us is stored on our secure servers behind firewalls.
Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted to our Website. Any transmission of personal information is at your own risk. We are not responsible for circumvention of any privacy settings or security measures contained on the Website.
We will post any changes we make to our Privacy Policy on this page. If we make material changes to how we treat our users’ personal information, we will notify you through a notice on the Website home page. The date the Privacy Policy was last revised is identified at the top of the page. You are responsible for periodically visiting our Website and this Privacy Policy to check for any changes.
To ask questions or comment about this Privacy Policy and our privacy practices, contact us at:
VSI KIDS PRIVACY ADDENDUM
The website vsikids.org/ (the “VSI Kids Website”) may be used by children. This “Addendum” to the VSI Privacy Policy (“Privacy Policy”) only applies to children and supplements the other provisions of the Privacy Policy. Terms that are defined in the Privacy Policy have the same meanings as used in this Addendum.
The Children’s Online Privacy Protection Act of 1998 and its rules (collectively, “COPPA”) require us to inform Parents about our practices for collecting, using, and disclosing personal information from children. It also requires us to obtain verifiable consent from a child’s parent for certain collection, use, and disclosure of the child’s personal information.
This Addendum notifies parents of:
INFORMATION WE COLLECT FROM CHILDREN
Children can access many parts of the VSI Kids Website and its content and use many of its features without providing us with personal information. However, some content and features require us to collect certain information, including personal information, from them. In addition, we use certain technologies, such as cookies, to automatically collect information from our users (including children) when they visit or use the VSI Kids Website.
We only collect as much information about a child as is reasonably necessary for the child to participate in an activity, and we do not condition their participation on the disclosure of more personal information than is reasonably necessary.
INFORMATION WE COLLECT DIRECTLY
Children may provide information to be published or displayed (hereinafter, “posted”) on public areas of the VSI Kids Website (“Story Spotlights”). The nature of this feature allows children to disclose personal information about themselves. A child must provide us with the following information to submit a Story Spotlight: the child’s name, photo, story, and a parent’s email address. We may request additional information from your child, but this information is optional. We specify whether information is required or optional when we request it.
Story Spotlights are posted on and transmitted to others at your own risk. Please be aware that no security measures are perfect or impenetrable. Additionally, we cannot control the actions of other users of the VSI Kids Website, therefore, we cannot and do not guarantee that Story Spotlights will not be viewed by unauthorized persons. We encourage parents to educate their children about safe internet use and to monitor their children’s use of social features.
ACCESSING AND CORRECTING YOUR CHILD’S PERSONAL INFORMATION
At any time, you may review your child’s personal information maintained by us, require us to correct or delete the personal information, and/or refuse to permit us from further collecting or using the child’s information.
You can review, change, or delete your child’s personal information by sending us an email at info@visualsnowinitiative.org. To protect your and your child’s privacy and security, we may require you to take certain steps or provide additional information to verify your identity before we provide any information or make corrections.
OPERATORS THAT COLLECT OR MAINTAIN INFORMATION FROM CHILDREN
No other third-party operators may collect or maintain personal information from children through the VSI Kids Website.
The Visual Snow Initiative (VSI) is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS. To date, our team has heard from people affected by VSS in over 93 countries. Together, we can find solutions!