Privacy Policy | Isa Elaine Foundation

Organization: Isa Elaine Foundation, a public name of Isabella Foundation, Inc. (EIN: 99-4435144)
Location: Florida, United States
Last updated: December 8, 2025
Sites covered: thereisacure.org, isaelaine.org, isaelainefoundation.org and related subdomains

When we refer to “Isa Elaine Foundation,” “Isabella Foundation, Inc.,” “we,” “us,” or “our,” we mean the U.S. nonprofit organization identified above. When we refer to the “Sites,” we mean thereisacure.org, isaelaine.org, isaelainefoundation.org, and any related subdomains or online services where this Privacy Policy is posted or linked.

1. Scope of this Privacy Policy

This Privacy Policy describes how we handle personal information that we collect:

When you visit or use the Sites;
When you communicate with us (for example, by email, phone, or contact forms);
When you make a donation or attend an event;
When you sign up to receive updates, newsletters, or other communications; and
When you otherwise interact with us in connection with our mission and programs.

This Policy does not cover the privacy practices of third-party websites, services, or organizations that we do not control (including hospitals, universities, payment processors, or fundraising platforms). Those parties have their own privacy policies, and we encourage you to review them.

2. Information We Collect

2.1 Information you choose to provide

We collect personal information that you voluntarily provide to us. This may include:

Contact details, such as your name, email address, postal address, phone number, and preferred method of communication;
Donation information, such as donation amounts, dates, designated purposes, and any notes you provide with your gift;
Payment-related information, such as partial payment details collected by third-party processors in order to complete your donation (we do not typically receive or store full credit card numbers);
Communications you send us, such as emails, messages via contact forms, or feedback you provide;
Event-related information, such as RSVPs, attendee lists, or dietary/accessibility preferences you choose to share; and
Information about your relationship to childhood dementia, BPAN, or NBIA that you voluntarily share as a family member, clinician, researcher, or supporter.

2.2 Information collected automatically

When you visit the Sites, we and our service providers may automatically collect certain information about your device and how you interact with the Sites. This may include:

IP address and approximate location (based on IP);
Browser type and settings;
Device type, operating system, and identifiers associated with your device;
Pages you visit, links you click, and the dates and times of your visits; and
Referring pages or sources (for example, if you arrive via a search engine or social media).

We typically collect this information using cookies, pixels, and similar technologies (described further below in the section titled Cookies & Similar Technologies).

2.3 Information from third-party sources

We may receive personal information about you from third-party sources, such as:

Donation and fundraising platforms that process gifts for the Foundation;
Payment processors and financial institutions involved in a donation or grant;
Event platforms or registration tools; and
Partners or peer organizations (for example, when we collaborate on a joint project or event).

We use this information to update our records, process donations, provide acknowledgments and receipts, and better understand how to serve and communicate with our supporters.

3. How We Use Personal Information

We use personal information for the following purposes:

Operating and improving the Sites, including troubleshooting, data analysis, testing, and security;
Responding to inquiries and communicating with you about our work, events, and opportunities to get involved;
Processing donations, issuing tax receipts and acknowledgments, and maintaining accurate donor and gift records;
Managing relationships with donors, families, clinicians, researchers, volunteers, and partners;
Conducting research and analysis on an aggregated or de-identified basis to understand engagement and improve our programs;
Complying with legal, regulatory, and tax obligations, including record-keeping and reporting requirements; and
Protecting our rights, safety, and the rights and safety of others, such as by detecting and responding to potential fraud or misuse of the Sites.

4. Legal Bases for Processing (EEA/UK Visitors)

This section applies if you are located in the European Economic Area (EEA), the United Kingdom (UK), or another region that requires a legal basis for processing personal information.

Where required by law, we process personal information on the following legal bases:

Your consent, for example when you sign up for newsletters or choose to provide certain information;
Legitimate interests, such as operating and improving the Sites, supporting our mission, maintaining donor relationships, and ensuring security, balanced against your privacy interests;
Performance of a contract, where processing is necessary to fulfill an agreement with you (for example, honoring donor restrictions on a gift); and
Compliance with legal obligations, such as accounting, tax, and reporting requirements.

5. Donor Privacy

The Isa Elaine Foundation deeply values the trust of donors and takes donor privacy seriously. This section describes specific practices related to donors and prospective donors.

5.1 Donor information we collect

In addition to the categories of information described above, we may collect the following information about donors and prospective donors:

Contact details (name, address, email, phone);
Donation history (amounts, dates, designations, and giving channels);
Preferred recognition name and preferences regarding anonymity;
Information needed to process matching gifts or workplace giving (for example, employer name); and
Notes about your interests in particular programs or projects, where appropriate to steward the relationship (for example, focus on BPAN research, family support, or policy work).

5.2 How donor information is used

We use donor information to:

Process donations and provide receipts and acknowledgments;
Honor donor designations and restrictions to the extent permitted by law;
Communicate impact updates and opportunities to support our mission;
Maintain accurate internal records for financial reporting, stewardship, and compliance; and
Recognize donors in reports or other materials, when consistent with donor preferences (including anonymity where requested).

5.3 Our commitments to donor privacy

Subject to limited exceptions described in this Policy, we:

Do not sell or rent donor personal information to other organizations.
Do not share donor personal information with other nonprofits or organizations for their own marketing purposes.
Limit sharing of donor information to what is necessary to process donations, comply with the law, or collaborate on a specific project you have chosen to support (for example, a hospital or university where the gift is directed).

In some cases, when a donation is designated to benefit a particular institution or partner (for example, a research center at a hospital or university), we may share limited donor information with that institution so that the gift can be properly processed, acknowledged, and stewarded, consistent with donor instructions.

5.4 Public recognition and anonymity

We may recognize donors by name (for example, in reports, on the Sites, or at events) unless you request to remain anonymous or the applicable law requires otherwise. If you prefer that your gift be anonymous, please let us know when making your donation or contact us using the details at the end of this Policy.

6. When We Share Information

We may share personal information with:

Service providers and vendors who perform services on our behalf, such as payment processors, fundraising and email platforms, data hosting providers, and professional advisors (for example, legal and accounting firms);
Partner organizations in connection with joint initiatives, events, or co-funded projects, when it is necessary to carry out the purpose of your interaction with us and consistent with your choices;
Authorities or other parties when required by law, regulation, legal process, or to protect the rights, property, or safety of the Foundation, our staff, partners, or others; and
Other parties with your consent or at your direction, including when you ask us to connect you with specific clinicians, researchers, or organizations.

We may also share aggregated or de-identified information (which does not reasonably identify you) for research, reporting, or analysis. When we do so, we take steps to reduce the chance that the information can be re-identified.

7. Cookies & Similar Technologies

Like many organizations, we and our service providers may use cookies, pixels, and similar technologies to operate the Sites and understand how they are used. Cookies are small text files stored on your device that help us:

Remember your settings and preferences;
Understand which pages are most frequently visited;
Measure the effectiveness of communications and campaigns; and
Improve the overall experience on the Sites.

You can usually configure your browser to refuse cookies, accept them only from certain sites, or alert you when cookies are being set. If you disable or reject cookies, some features of the Sites may not function properly.

At this time, our Sites do not respond to browser “Do Not Track” signals. You can use the controls described above and in your browser or device settings to manage tracking technologies.

8. Data Retention

We retain personal information for as long as reasonably necessary to fulfill the purposes described in this Policy, including:

Providing the Sites and related services;
Maintaining records of donations and other support;
Complying with legal, tax, and accounting requirements; and
Resolving disputes and enforcing our agreements.

The specific retention period can vary based on the type of information and applicable legal requirements. For example, we may retain donation and financial records for a minimum period required under tax and charity laws.

9. Security

We use reasonable administrative, technical, and physical safeguards to help protect personal information from unauthorized access, use, alteration, or destruction. However, no system or method of transmission over the internet is completely secure, and we cannot guarantee absolute security.

If you have reason to believe that your interaction with us is no longer secure (for example, if you suspect that the security of your account or donation has been compromised), please contact us immediately using the details at the end of this Policy.

10. Your Choices

You have choices regarding how we use and communicate with you:

Emails and updates: You may opt out of receiving non-transactional emails (such as newsletters and updates) by following the unsubscribe instructions in those messages or by contacting us. We may still send you important administrative or transactional messages (for example, donation receipts).
Accuracy of information: You may request that we update or correct your contact details or preferences by contacting us.
Donor recognition preferences: You may request that your gifts be treated as anonymous or that your name be listed differently in recognition materials.

11. Your Rights (Depending on Where You Live)

Depending on your place of residence, you may have certain rights under data protection or privacy laws. These rights may include the ability to:

Request access to the personal information we hold about you;
Request correction or update of inaccurate personal information;
Request deletion of certain personal information;
Object to or request restriction of certain processing; and
Receive a copy of personal information in a portable format.

To exercise these rights, where available, please contact us using the details at the end of this Policy. We may need to verify your identity and location before responding. We will respond in accordance with applicable law.

11.1 California residents

If you are a California resident, you may have additional rights under the California Consumer Privacy Act (CCPA) or similar state laws.

In general terms, and subject to certain exceptions, California residents may have the right to:

Request to know categories and specific pieces of personal information we have collected;
Request deletion of certain personal information;
Correct inaccurate personal information; and
Not be discriminated against for exercising these rights.

We do not sell personal information, and we do not share personal information for cross-context behavioral advertising in the sense defined by applicable California law.

11.2 EEA/UK residents

If you are located in the EEA or UK, you may have additional rights under the GDPR or UK GDPR, including the right to lodge a complaint with a supervisory authority in your country of residence or place of work.

If you wish to exercise these rights, please contact us. We will process your request in accordance with applicable law and, where appropriate, explain our grounds if we are unable to fulfill part of your request.

12. Children’s Privacy

The Sites are primarily directed to adults, including parents, caregivers, clinicians, researchers, and supporters. We do not knowingly collect personal information directly from children under the age of 13 (or a higher age where required by applicable law) without verifiable parental consent.

In some situations, we may receive information about children from parents or legal guardians in the context of our mission (for example, when a family shares their story or seeks resources). We expect such information to be provided by adults and used only in ways consistent with this Policy and applicable law.

If you believe we have collected personal information directly from a child without appropriate consent, please contact us and we will take steps to review and, if appropriate, delete the information.

13. International Data Transfers

The Foundation is based in the United States, and the personal information we collect is typically processed in the United States. If you access the Sites from outside the United States, your information may be transferred to, stored, and processed in a country that may have different data protection laws than your country of residence.

Where required by law, we will take appropriate steps to ensure that cross-border transfers are subject to suitable safeguards designed to protect your personal information.

14. Links to Other Websites

The Sites may contain links to third-party websites or services (for example, hospitals, research centers, fundraising pages, or partner organizations). We are not responsible for the privacy practices or content of those third parties. We encourage you to read the privacy policies of any websites you visit.

15. Changes to This Privacy Policy

We may update this Privacy Policy from time to time. When we do, we will revise the “Last updated” date at the top of this page. Significant changes may also be communicated more prominently (for example, via a notice on the Sites).

Your continued use of the Sites after an updated Policy is posted signifies your acceptance of the revised Privacy Policy.

16. How to Contact Us

If you have any questions about this Privacy Policy, our privacy practices, or your personal information, please contact us:

Isa Elaine Foundation
A public name of Isabella Foundation, Inc. (EIN: 99-4435144)
5000 Sawgrass Village Circle, Suite 25
Ponte Vedra Beach, FL 32082
Email: [email protected]
Phone: (904) 822-5089