Privacy Policy

Information you give us directly

• Donations. When you donate, we collect your name, email address, billing address, donation amount and frequency, and any dedication message you include. Payment card details are collected and processed directly by Stripe, Inc.; we never see or store your full card number.
• Forms and email. When you fill in our “Join Us,” contact, or newsletter forms, or email us, we collect the information you provide, such as your name, email address, country, and message.
• Family and health information. Families sometimes choose to share information about a child’s diagnosis, symptoms, treatment, or medical history so we can offer support or connect them with researchers. This is sensitive information. We collect it only when you choose to share it, use it only for the purpose you shared it, and never publish it without your explicit written consent (see Section 6).
• Stories, photos, and testimonials. If you submit a story or photo for publication, we collect the content you submit together with your consent to publish it.

Information collected automatically

• Technical data. Like most websites, our Site records your IP address, browser type, device type, pages visited, referring page, and time of visit.
• Cookies and similar technologies. We use strictly necessary cookies to make the Site work and to process donations. You can control cookies through your browser settings; disabling cookies may affect the donation flow.

We do not knowingly collect personal information directly from children under 13. Our Site is intended for adults. Information about children is provided to us by their parents or legal guardians.

We use personal information to:

• process donations, send receipts and acknowledgments, and maintain the records required by U.S. tax law;
• respond to your messages and requests;
• provide support and information to families affected by HIKESHI-related leukodystrophy, when you ask us to;
• send updates about our research, events, and the foundation’s work, if you have signed up or donated (you can unsubscribe at any time);
• publish stories, photos, or testimonials you have expressly consented to share;
• operate, secure, and improve the Site;
• comply with legal obligations, including charitable-solicitation and tax reporting requirements.

We do not sell, rent, trade, or share our donor or mailing lists with anyone, for any purpose.

Where applicable law requires a legal basis, we rely on: contract (processing your donation and sending your receipt); consent (newsletter sign-ups, publication of stories and photos, and any health information you share with us); legitimate interests (running and securing the Site, communicating with supporters in a way you would reasonably expect); and legal obligation (tax and charitable-registration record keeping). You may withdraw consent at any time by contacting us.

We share personal information only with service providers who help us operate, and only to the extent needed:

• Stripe, Inc. — payment processing. Stripe’s handling of your data is governed by its own privacy policy at stripe.com/privacy.
• Email and hosting providers — to send receipts and updates and to host the Site and its database.
• Professional advisers — accountants and attorneys, under confidentiality obligations, where needed to run the foundation.
• Researchers and clinicians — only if you ask us to connect you, and only the information you authorize us to pass on.
• Legal requirements — if required by law, subpoena, or to protect the rights and safety of the foundation, our supporters, or others.

We may share aggregated or de-identified information (for example, “we received 200 donations from 14 countries”) that cannot reasonably identify you.

The foundation is incorporated in the United States, and our founders currently operate from Israel. Information you provide is stored on servers in the United States and may be accessed from Israel. If you are in the EEA, UK, or another jurisdiction with data-transfer rules, you understand that your information will be transferred to and processed in the United States, where privacy laws may differ from those in your country. We rely on your consent and, where applicable, on standard contractual protections with our service providers.

Information about a child’s diagnosis or medical history is among the most sensitive information we hold. Our commitments:

• We collect it only when you choose to share it.
• We use it only for the purpose you shared it — typically to offer support, answer questions, or connect you with researchers at your request.
• We never publish a family’s name, photo, story, or medical details without explicit written consent from the parent or legal guardian, and you may withdraw that consent at any time; we will remove the content from the Site within a reasonable period, though copies may persist in search engine caches or where it has been shared by others.
• We do not share health information with third parties except as you direct or as required by law.

We are a charitable organization, not a healthcare provider, and are not a “covered entity” under HIPAA. Please do not send medical records unless we have specifically asked for them.

• Email updates. Unsubscribe using the link in any email or by contacting us. We will still send transactional messages such as donation receipts.
• Recurring donations. You can change or cancel a monthly gift at any time by contacting us.
• Access, correction, deletion. You may ask us what personal information we hold about you, ask us to correct it, or ask us to delete it. We will honor deletion requests except where we must retain records by law (for example, donation records for tax purposes).
• EEA/UK residents have additional rights under the GDPR, including data portability, restriction of processing, objection, and the right to lodge a complaint with your local supervisory authority.
• California residents have the right to know what personal information we collect and how it is used, to request deletion, and to not be discriminated against for exercising these rights. We do not sell personal information and have not done so in the preceding 12 months.
• Israel residents have rights of access and correction under the Protection of Privacy Law, 5741-1981.

To exercise any right, contact us at the address in Section 11. We may need to verify your identity before acting on a request.

We keep donation records for at least seven years to meet U.S. tax and accounting requirements. We keep contact information for as long as you remain a supporter or until you ask us to delete it. Health and family information is kept only as long as needed for the purpose you shared it, or until you ask us to delete it. Technical log data is kept for a limited period for security purposes.

We use reasonable administrative, technical, and physical safeguards to protect personal information, including encryption in transit (HTTPS), access limited to those who need it, and processing of payment data exclusively by Stripe, a PCI-DSS Level 1 certified provider. No method of transmission or storage is completely secure, and we cannot guarantee absolute security.

We may update this Policy from time to time. We will post the new version on the Site with a new effective date. If the changes are material, we will let you know by email or a notice on the Site before they take effect.

Hikeshi Foundation Inc.
750 Lexington Avenue, Ste 07-119
New York, NY 10022, United States
Email: amanilov@hikeshifoundation.org