Privacy Policy


Epilepsy Wellness Advocates Inc., a nonprofit 501(c)(3) corporation, is a project of the Charles L. Shor Foundation (the “Foundation”) that has been established to offer information regarding epilepsy treatments, developments, and innovations in order to improve the quality of life of individuals with epilepsy (referred to collectively, as “Individuals,” “You,” “Your,” and “User”).  Epilepsy Wellness Advocates Inc. and the Foundation are referred to collectively herein as “EWA”, “we”, “us” or “our”.

Among other things, EWA engages in the collection of anonymous information through surveys (each, a “Survey”), via EWA’s website at (the “Website”) and the dissemination of anonymized aggregated information and insights based upon such Surveys (the “Survey Results”).  The Website, Surveys, and the Survey Results, as well as all content contained therein are referred to collectively herein as the “Resources”.  By accessing, browsing, and/or using the Resources, You acknowledge that You have read and agree to be bound by the Terms of Service (“Terms“) and this Privacy Policy.

EWA is committed to protecting and respecting Your privacy. 

This Privacy Policy describes how we collect, use, protect and share information about You, as an individual, that we obtain when You access and use our Resources.  All capitalized terms not otherwise defined herein shall have the meanings ascribed thereto in the Terms.

In addition, this Privacy Policy applies to information that we obtain when You communicate or interact with us outside of the Resources, including by e-mail, telephone and otherwise.


Information You Provide to Us

We collect and store information that You provide directly to us, including when You submit information and respond to a Survey, contact us with questions or comments, or provide other feedback.

Surveys. We anonymize all data we collect through Surveys (“Survey Data”). Anonymization is a data processing technique that removes or modifies individually identifiable health information; it results in anonymized data that cannot be associated with any one individual. The Surveys and all Survey Data is initially stored on a secure encrypted server hosted by Amazon Web Resources (“AWS”) that is inaccessible by EWA. Once aggregated and anonymized, the Survey Data is encrypted and transferred to a separate encrypted AWS-hosted analysis database owned and maintained by EWA. Only the final anonymized and processed Survey Data is received by and accessible to EWA.

EWA does not collect or seek any “health information,” “individually identifiable health information,” or “protected health Information” (“PHI”), as these terms are defined in The Health Insurance Portability and Accountability Act of 1996 (“HIPAA”). Please do not provide this information to us, including through Surveys, e-mails, feedback forms or otherwise.

Information Collected While Using Our Resources

We may collect and store certain technical information when You access, browse and use our Resources. This technical information helps us operate our Resources and provide access to You, and includes standard information about visits and system capabilities, such as:

  • information about Your visits to the Resources, including the full URL clickstream to, through, and from the Resources (including date and time);
  • information we need and use to facilitate Your use of our Resources (including to provide access to third-party websites and services), such as URL requests, destination IP addresses, or device configuration details;
  • pages You view, Content You select to view, length of time viewing content; and
  • page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), Your engagement with certain variable/dynamic elements of a page and methods used to browse away from the page.


We may use any of the information we collect to:

  • allow us to operate our Resources, including administration, internal operations, troubleshooting, data analysis, testing, research, statistical and survey purposes;
  • manage Your access to our Resources;
  • send You information that enables You to use our Resources;
  • comply with laws and regulations;
  • protect the integrity and maintain the security of our Resources, including secured areas of the Website;
  • in any other way that we describe when You provide the information; and
  • for any other purpose for which You may provide consent.


We will not sell or share information you provide to us with third parties, except with:

  • our service providers and subcontractors to the extent reasonably necessary to enable us to operate and provide our Resources to You;
  • a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution or other sale or transfer of some or all of our assets, whether as a going concern or as part of bankruptcy, liquidation or similar proceeding, in which non-individually identifiable health information held by us about Individuals is among the assets transferred;
  • You, upon Your written request; and
  • other third parties with Your express consent.

We may disclose Your non-individually identifiable health information:

  • to comply with any court order, law or legal process, including to respond to any government or regulatory request;
  • to investigate potential unauthorized access or misuse of our Resources or otherwise enforce our Terms, or other agreements;
  • to protect our assets or rights, including for billing and collection purposes;
  • if we believe disclosure is necessary or appropriate to protect the rights, property, or safety of EWA, Individuals or others, including exchanging information with other companies and organizations for the purposes of fraud protection and credit risk reduction; and
  • for any other purpose disclosed by us when You provide the information.

We may share non-individually identifiable health information, aggregated, or -de-identified data:

  • with analytics, search engine, or other service providers that help us improve our Resources;
  • to advertisers and advertising networks to select and serve relevant advertisements; and
  • with any other party for the purposes described in this Policy.


We do not use cookies, beacons and similar technologies to support the functionality of our Resources or to identify You when You visit or access the Resources. However, we reserve the right to use cookies or similar technology in the future.

Cookies From Trusted Third Parties

We utilize the technology and functionalities of third parties on a regular basis to perform the Resources and provide the Surveys. This may mean that there will be a number of third party cookies from our trusted service providers used on our Website. Each company is responsible for the cookies that they place onto your device and each have separate policy documents to highlight their use.


You may have the opportunity to receive certain communications from us related to our Resources. If You provide us with Your e-mail address in order to receive communications, You can opt out of marketing e-mails at any time by following the instructions at the bottom of our e-mails and adjusting Your e-mail preferences. Please note that certain e-mails may be necessary for the operation of our Resources. You will continue to receive these e-mails, if appropriate, even if You unsubscribe from our optional communications.

Some browsers support a “Do Not Track” feature, which is intended to be a signal to websites that You do not wish to be tracked across different websites You visit. Our Resources do not currently change the way they operate based upon detection of a Do Not Track or similar signal.

Please note that we cannot control how third-party websites or online services You visit through our Resources respond to Do Not Track signals. Check the privacy policies of those third parties for information on their privacy practices.

You may opt out of our direct telemarketing contacts by requesting us to remove You from our direct telemarketing list. Please note that opting out from our direct telemarketing contacts does not limit us from contacting You for other purposes, including those contacts that are reasonably necessary to provide You with our Resources. If You decide to opt out of our direct telemarketing contacts, kindly allow a reasonable time for us to process Your request, and do not hesitate to contact us at if You encounter any problems with Your request. We also comply with the FTC’s National Do Not Call Registry at and related rules.


The security of Your information is important to EWA, and we have established reasonable administrative, technical, and physical safeguards designed to protect Your information against loss, alteration, unauthorized access, theft, misuse or disclosure. We evaluate these safeguards on an ongoing basis to help minimize risks from new security threats as they become known. Unfortunately, no system can guarantee complete security of Your information. As a result, EWA cannot ensure or warrant that Your information will be secure from unauthorized third parties. Thus, Your use of the Resources and communication with us about them is at Your own risk, and except as expressly required by law, we are not responsible for the theft, destruction, loss or inadvertent disclosure of your information or content.


Individuals that are under 18 years of age may not use the Resources unless they possess written legal parental or guardian consent or are a parent or guardian accepting the Terms on behalf of such parent or guardian and such under 18 year old individual. 

We do not knowingly collect or solicit information from children under 13.  Children under the age of thirteen (13) are prohibited from accessing or using the Resources.



Our Resources may contain links to third-party websites and services, including those of our partners, service providers, and advertisers. Please note that these websites and services may have their own privacy policies. This Privacy Policy applies to EWA and our Resources only. We do not accept any responsibility or liability for the policies or practices of any third parties. If You chose to access any websites or services linked from our Resources, please check the applicable policies before You use or submit any personal data to such website or service.


We may change this Privacy Policy from time to time to align with changes to our business practices and/or changes to our legal requirements. Your continued use of the Resources or communication with us after any updated Privacy Policy has been posted (or any other indication of Your consent) will constitute Your acceptance of the updated Privacy Policy.

Please note that we may condition Your continued access to our Resources on Your consent to changes to this Privacy Policy.


You can contact EWA per the below methods, but please do not share any health information, individually identifiable health information, or PHI.

If You have questions, comments or requests relating to this Privacy Policy, please e-mail us at, or write to us at:

Privacy Requests
441 Vine Street, Ste 200
Cincinnati, OH 45202

This Privacy Policy is Effective as of April 16, 2023