Privacy Policy

The Pharus Foundation and The Pharus Project

Effective date: September 3, 2026 | Last updated: September 30, 2026

Our core privacy commitments
We do not sell personal information or caregiver testimony. We honor the privacy and attribution choices documented with each participant. We use information only to carry out our charitable mission, operate our services, protect participants, and comply with law. We explain below when carefully selected service providers or mission-aligned collaborators may receive limited information.

1. Who We Are and What This Policy Covers

The Pharus Foundation (the “Foundation,” “Pharus,” “we,” “us,” or “our”) is a mission-driven organization. Its first initiative, The Pharus Project, seeks to create a central repository of knowledge from people who have cared for, or are currently caring for, someone with Alzheimer’s disease or another form of dementia. By collecting and responsibly sharing firsthand video testimony and related materials, the Project aims to offer caregivers hope, guidance, and practical help.

This Privacy Policy explains how we collect, use, disclose, retain, and protect information when you visit pharusfoundation.org; contact us; subscribe to communications; donate; attend an event; complete a survey or form; volunteer; apply to participate in an interview; provide testimony; or otherwise interact with the Foundation or The Pharus Project (collectively, the “Services”).

This Policy does not replace a participant consent form, interview agreement, or media release. Those documents specify whether and how a particular interview, recording, transcript, photograph, name, likeness, or story may be used. This Policy does not grant the Foundation broader rights than a participant has affirmatively provided in those documents.

2. Information We Collect

Information you provide

Depending on how you interact with us, you may provide:

Contact information, such as your name, email address, telephone number, mailing address, and communication preferences.
Participation information, such as your relationship to caregiving, general background, areas of experience, scheduling information, accessibility needs, and the privacy or attribution option you select.
Testimony and content, including video or audio recordings, photographs, written responses, interview notes, transcripts, captions, correspondence, and other materials you choose to share.
Sensitive information contained in a caregiver story, which may include information about health, disability, family relationships, emotional wellbeing, finances, or other personal circumstances. Please share only information you are comfortable providing and are authorized to provide.
Donation and transaction information, such as your name, billing address, donation amount, and limited transaction records. Payment-card and bank information is ordinarily collected and processed by our payment provider rather than stored by the Foundation.
Event, volunteer, survey, inquiry, or newsletter information.
Any other information you voluntarily send to us.

Information collected automatically

When you use our website, we and our service providers may automatically collect limited technical information, such as IP address, browser and device type, operating system, pages visited, referring page, approximate location derived from IP address, date and time of access, and interactions with website or email content. We may use cookies and similar technologies for essential site operation, security, preferences, and—if enabled—aggregate analytics.

Information from other sources

We may receive information from event hosts, referral partners, service providers, publicly available sources, or a person who nominates or introduces a potential participant. We will not treat a referral as consent to record, identify, or publish that person.

3. How We Use Information

We may use information to:

communicate with you and respond to questions, requests, and feedback;
evaluate, schedule, prepare, conduct, edit, caption, preserve, and—when authorized—publish caregiver interviews and related materials;
apply and document participant privacy, attribution, and withdrawal choices;
organize the Project’s repository and make authorized content useful and discoverable to caregivers;
operate, maintain, secure, troubleshoot, and improve our website, programs, events, and Services;
process donations and maintain legally required financial and tax records;
send updates or educational communications you requested, with a means to unsubscribe from promotional email;
conduct program evaluation, research, reporting, or educational work using information in a form permitted by the participant’s consent and, where appropriate, aggregated or de-identified;
protect the rights, safety, security, and integrity of participants, care recipients, the public, the Foundation, and our Services; and
comply with applicable law, enforce agreements, and establish or defend legal claims.

We will not use confidential or restricted testimony for a materially different purpose without obtaining additional permission when required.

4. Caregiver Testimony, Attribution, and Confidentiality

Caregiver testimony is central to The Pharus Project and deserves protection beyond ordinary website data. Before an interview is recorded or published, we intend to document the participant’s choices in a separate written consent or release. Available choices may include the following, as specified in the applicable consent form:

• Public attribution. The participant authorizes use of the approved name, image, voice, biographical details, and testimony in the channels described in the consent form.

• Limited or de-identified attribution. The participant authorizes use of the testimony subject to agreed limitations—for example, first name only, a pseudonym, general geographic information, removal of direct identifiers, altered framing, or text-only excerpts.

• Confidential submission. Information provided in confidence is not published or attributed and is accessible only to authorized people who need it for the permitted purpose, except as described under “Required or Protective Disclosures.” A confidential submission will not be converted to public testimony without separate affirmative permission.

We will record the agreed privacy status with the recording, transcript, notes, and related metadata; limit access accordingly; and use reasonable review procedures before publication. If a participant requests confidentiality or limited attribution, we will instruct personnel and service providers who receive the material to respect those restrictions.

De-identification reduces risk but cannot guarantee anonymity. A voice, image, distinctive event, relationship, location, or combination of details may allow someone familiar with the circumstances to recognize a person. We will discuss practical redactions or production choices when that risk is material.

We do not use confidential, identifiable testimony to train a third party’s general-purpose commercial artificial-intelligence model, and we do not authorize a third party to do so, unless the participant gives separate, explicit written permission.

5. Privacy of the Person Receiving Care and Other Third Parties

A caregiver’s story often includes information about a person living with Alzheimer’s disease or another form of dementia, as well as relatives, clinicians, or other caregivers. A participant’s consent to share their own experience does not necessarily authorize disclosure of another person’s private information, image, or voice.

We ask participants to avoid unnecessary identifiers such as full names, precise addresses, dates of birth, medical-record numbers, financial-account information, and other details that are not needed to communicate the caregiving lesson. The Foundation may pause an interview, omit content, blur or crop an image, mute a name, generalize a detail, or otherwise edit material to reduce privacy risk. We may decline to publish content when we believe disclosure could cause undue harm or violate another person’s rights.

6. We Do Not Sell Personal Information or Testimony

The Foundation does not sell, rent, or trade personal information or caregiver testimony. We do not provide it to data brokers, advertisers, marketers, artificial-intelligence model developers, or other third parties for their own independent commercial use.

A payment to a vendor that helps us operate the Services—for example, secure hosting, transcription, captioning, email delivery, or donation processing—is not a sale of your information. Such providers may receive only the information reasonably necessary to perform contracted services and are expected to protect it and use it only for those services.

7. When We May Share Information

We may disclose limited information in the following circumstances:

Service providers. Vendors may support website hosting, cloud storage, recording, editing, transcription, captioning, accessibility, communications, analytics, event administration, security, professional advice, or donation processing.
Mission-aligned collaborators. Universities, researchers, nonprofit organizations, educators, advisors, or production partners may receive information when the collaboration advances the Foundation’s mission and the disclosure is consistent with the participant’s consent. We will use appropriate confidentiality, data-use, or publication restrictions when warranted.
At your direction or with your consent. We may share information when you ask us to or give specific permission.
Organizational change. If the Foundation reorganizes, combines with another nonprofit, transfers a program, or winds down, information may be transferred to a successor that agrees to honor applicable privacy and participant-use restrictions.
Required or protective disclosures. We may disclose information when reasonably necessary to comply with law, subpoena, court order, governmental request, or legal process; investigate fraud or security concerns; enforce agreements; or protect the rights, safety, or security of a person, the Foundation, or the public. Where legally permitted and appropriate, we will seek to limit the disclosure and notify the affected person.

We may share information that has been aggregated or de-identified so that it does not reasonably identify an individual, provided that doing so remains consistent with any participant restrictions.

8. Participant Choices, Access, Correction, and Withdrawal

You may contact us at [thepharusfoundation@gmail.com] to request that we:

explain the privacy or attribution status recorded for your submission;
provide access to or correct personal information we maintain about you;
update your contact or communication preferences;
stop future promotional email;
change future attribution or request additional redaction, subject to the participant agreement and practical feasibility; or
delete personal information or remove testimony from future Foundation-controlled publication, subject to the limitations below.

We may need to verify your identity before acting on a request. We will respond within a reasonable time and explain if we cannot fully grant a request.

A request to withdraw or remove testimony generally applies prospectively. We may be unable to retrieve copies already downloaded, quoted, archived, indexed, or independently shared by others after authorized public release. We may retain limited copies in secure backups, legal files, consent records, financial records, or internal archives where necessary to document prior authorization, comply with law, resolve disputes, protect rights, or maintain the integrity of the historical record. We will not republish removed content from those restricted copies unless legally permitted and consistent with the applicable agreement.

9. Data Retention

We retain information only for as long as reasonably necessary for the purposes described in this Policy, the applicable participant agreement, and legal or operational requirements. Retention periods vary by information type.

Authorized public testimony and related archival materials may be kept for an extended period or indefinitely because preserving caregiver knowledge is part of the Project’s mission. Confidential submissions, working files, contact information, and technical data will be retained only as long as needed for their permitted purposes, subject to backup cycles and legal obligations.

10. Security

We use reasonable administrative, technical, and physical safeguards designed to protect personal information. Depending on the information and risk, these may include access restrictions, role-based permissions, contractual confidentiality duties, secure storage and transmission, multifactor authentication, backups, and review of service providers.

No method of transmission or storage is completely secure. We cannot guarantee absolute security. If we learn of a security incident affecting information for which notice is appropriate or legally required, we will investigate and provide notice as required by applicable law.

11. Cookies, Analytics, and Communications

Cookies and similar technologies may help the website function, remember preferences, measure aggregate use, and protect against abuse. You can often control cookies through your browser settings, although disabling essential cookies may affect site operation.

If you subscribe to Foundation communications, we may use your contact information to send requested news, educational resources, event notices, or fundraising messages. You may unsubscribe from promotional email through the link in the message or by contacting us. We may still send non-promotional messages related to an interview, donation, request, transaction, security matter, or other ongoing relationship.

12. Donations

Donation transactions may be processed by an outside payment provider. That provider’s collection and handling of payment credentials are governed by its own privacy and security terms. The Foundation may retain donor contact information, donation amount, date, campaign designation, acknowledgment preferences, and records required for accounting, tax, fraud-prevention, and legal purposes. We do not sell donor information.

13. Third-Party Websites and Platforms

Our Services may link to or embed content from third-party websites or platforms, including video hosts, donation processors, event services, and social media. Their privacy practices are governed by their own policies. A public testimony posted on a third-party platform may be subject to that platform’s functionality, indexing, sharing, and retention practices. We encourage you to review those policies before using the service.

14. Children and Young Caregivers

Our general website is not directed to children under 13, and we do not knowingly collect personal information online from a child under 13 without appropriate parental or guardian consent. If you believe a child has provided personal information without such consent, contact us so we can review and, where appropriate, delete it.

If the Foundation develops a program that intentionally records or collects the story of a person under 18, we will use a separate process designed for that program, including age-appropriate explanation, the young person’s assent when appropriate, and written permission from a parent or legal guardian unless a different process is permitted by law and approved by counsel.

15. Visitors Outside the United States

The Foundation is based in the United States. If you access the Services from another country, your information may be processed and stored in the United States, where privacy laws may differ from those in your location. Before intentionally collecting testimony or sensitive information from residents of another country, the Foundation may provide additional notices or obtain additional consent as required.

16. Changes to This Policy

We may update this Privacy Policy as our programs, technology, or legal obligations change. We will post the revised Policy with a new “Last updated” date. If a change would materially expand how we use previously collected confidential or restricted testimony, we will seek additional permission when required rather than relying only on a website posting.

17. Contact Us

Questions, concerns, privacy requests, or complaints may be directed to:

Privacy Contact
The Pharus Foundation
216 Vance Street

Chapel Hill, NC 27516

Email: thepharusfoundation@gmail.com
Telephone: 919.904.1489
Website: pharusfoundation.org