Maddie’s Spark Foundation
Last updated: October 1, 2026

Maddie’s Spark Foundation ("MSF," "we," "us," or "our") operates www.maddiesspark.org and its related website pages (the "Site") and provides the programs, resources, and services offered through the Site (the "Services"). MSF is a Pennsylvania-based 501(c)(3) nonprofit dedicated to raising awareness of VLCAD deficiency and related long-chain fatty acid oxidation disorders, supporting research, and empowering affected families.

This Privacy Policy ("Policy") describes the information we collect, how we use it, when we share it, and the choices you have regarding your information. It applies to information collected through the Site, online forms, and related online Services. Third-party platforms may also collect information under their own privacy policies.

Please read this Policy before using the Site or submitting information. We may update this Policy as our programs, technology, or practices change. Updates will be posted here with a revised date. Where required by applicable law, we will provide additional notice or obtain consent. Your use of the Site does not waive any privacy rights you may have under applicable law.

Collecting Information
Information you choose to provide. We may collect information when you contact us, subscribe to our newsletter, make a donation, register for an event or program, complete a survey, request resources, volunteer, or submit a family story or photograph. Depending on your interaction with MSF, this information may include:

• Your name, email address, mailing address, and phone number.

• Donation, registration, and transaction details.

• Information about your interests, communication preferences, or involvement with MSF.

• Information you voluntarily share about yourself or your family, including a VLCAD diagnosis, age, support needs, or experiences living with a rare disease.

• Stories, photographs, and other materials you submit for an authorized purpose.

Please provide only information relevant to your request. Do not submit medical records or detailed clinical information unless specifically requested for a stated purpose. If you provide information about another person, including your child, you must have appropriate authority or permission to do so.

Submitting a request or registering for a program may result in communications needed to respond to your request or administer that program. Newsletter and fundraising communications are subject to your preferences and applicable consent requirements.

Information collected automatically. Our Site and the providers supporting it may automatically collect information such as your IP address, approximate location, browser and device type, operating system, referring pages, pages viewed, and interactions with the Site. Some of this information may be considered personal information under applicable law, even when it does not include your name.

Cookies and Analytics
The Site and third-party tools embedded in it may use cookies, pixels, or similar technologies to support website functions and understand how visitors use the Site. The information collected depends on the tools enabled and your preferences.

You can manage cookies through your browser settings and any cookie controls made available on the Site. Disabling some cookies may affect website functionality. Blocking cookies does not necessarily prevent every form of automatic data collection.

If Google Analytics is used on the Site, information about website activity and devices may be processed by Google. More information is available in Google’s Privacy Policy. Other analytics or website providers may process information under their own privacy policies. Where required by applicable law, consent will be requested before using nonessential tracking technologies.

Payment Processing
Online donations, event registrations, and other payments may be handled through third-party fundraising platforms and payment processors. Payment information submitted through these platforms is governed by the applicable provider’s privacy policy and terms.

When you use Givebutter to support MSF, please review Givebutter’s Privacy Policy. Givebutter uses third-party payment processors to collect and process payment information.

MSF may receive information needed to acknowledge your donation, provide a receipt, manage registrations, and maintain donor records, such as your name, contact information, donation amount, and transaction status. Please do not send credit card numbers or bank account information to MSF by email.

Use of Information
We may use information for purposes related to our mission and operations, including:

• Responding to questions and requests.

• Administering donations, event registrations, volunteer opportunities, and family programs.

• Providing requested resources and support.

• Sending receipts, confirmations, program updates, and communications consistent with your preferences.

• Understanding community needs and improving programs, resources, and the Site.

• Maintaining records, protecting the Site, preventing misuse, and meeting legal obligations.

Information voluntarily shared about a diagnosis or family experience may help us respond to a resource request or plan family programming. Providing that information does not enroll you or your child in a research study. Any separate research participation would require its own information and applicable consent process.

Sharing of Information
We do not sell or rent your personal information. We may share information:

• With service providers supporting website hosting, communications, fundraising, payment processing, registration, or other operational functions, as needed to perform those services.

• With program or event partners when necessary to fulfill a request or administer an activity, with notice and consent where required.

• When you authorize a specific disclosure, such as participation in an optional family connection opportunity or publication of a story or photograph.

• When required by law, legal process, or a valid governmental request, or when reasonably necessary to protect rights, property, or safety.

We may share summaries of community needs or program outcomes that do not identify individual families. We will not share identifiable medical or family information with researchers merely because you completed a survey or requested support. Any such disclosure requires an appropriate legal basis and your explicit permission where required.

Family Stories, Photos, and Community Connections
If you choose to submit a story, photograph, or other material for public use, we will explain the intended use and request appropriate permission before publication. Published materials may be accessible to people outside the MSF community and may be copied or shared by others.

Optional peer connections require your permission before we share your contact information with another family. You may contact us to change your preferences or request removal of materials from channels we control. We cannot guarantee removal of copies previously downloaded, printed, or shared by others.

Retaining Information
We retain personal information for as long as reasonably needed for the purposes described in this Policy, including providing Services, maintaining donation and financial records, complying with legal requirements, and resolving disputes. Retention periods vary by the type of information and its purpose.

Users Outside the United States
MSF is based in Pennsylvania, United States. Information submitted to us may be processed in the United States and in other locations where our service providers operate. Privacy laws in those locations may differ from those in your country. Where applicable law requires safeguards for international transfers, we will use the required safeguards. Providing information does not waive any rights you have under applicable law.

Third-Party Sites
The Site may link to or embed services from other organizations or platforms. Their privacy practices are governed by their own policies. MSF does not control those practices. Please review the privacy policies of third-party sites before submitting information to them.

Managing, Correcting, or Deleting Your Information
You may unsubscribe from marketing emails using the unsubscribe link provided in the message or by contacting ashley@maddiesspark.org. You may still receive communications needed to fulfill an active request, issue a receipt, or administer an event or program for which you registered.

To request access to, correction of, or deletion of information we hold about you, email ashley@maddiesspark.org. Include your name and the email address associated with your interaction with MSF. We may request limited additional information to verify your identity or authority to make the request. Please do not email sensitive identity documents unless we arrange an appropriate method.

Some records may need to be retained for legal, accounting, security, or other permitted purposes. Requests concerning information held independently by a third-party platform may need to be directed to that provider.

Depending on your location and the laws applicable to MSF, you may have additional rights, including rights to restrict or object to processing, receive information in a portable format, withdraw consent, or complain to a relevant supervisory authority. Where the General Data Protection Regulation (GDPR) applies, requests will be handled in accordance with its requirements. We will respond within the period required by applicable law and will not discriminate against you for exercising applicable privacy rights.

Children’s Privacy
The Site and Services are intended for adults, including parents, guardians, caregivers, supporters, and professionals. We do not knowingly collect personal information directly from children under 18. Parents or authorized guardians may voluntarily provide information about a child when requesting support, registering for a family activity, or authorizing a story or photograph.

If you believe a child has submitted personal information directly without appropriate authorization, please contact ashley@maddiesspark.org so we can review the information and take appropriate action.

Data Security
We use reasonable administrative, technical, and organizational measures intended to protect personal information. However, no website, electronic transmission, or storage system can be guaranteed to be completely secure. Please use caution when sharing information online and avoid sending sensitive medical or financial information by ordinary email.

Contact Information
For questions about this Policy or requests concerning your information, contact us via email ashley@maddiesspark.org or via mail at 1124 Olivia Drive, Oakdale, PA 15071.