1. Agreement to these terms

These Terms of Use ("Terms") govern your use of www.huwe1foundation.org and any pages, forms, and features on it (the "Site"), operated by the HUWE1 Foundation ("we," "us," "our"), a 501(c)(3) nonprofit organization based in Jackson, Wyoming. By using the Site, you agree to these Terms and to our Privacy Policy. If you do not agree, please do not use the Site.

If you are under 18, please use the Site only with a parent or guardian.

2. Educational information only, not medical advice

The Site shares information about HUWE1-related disorders and research for educational purposes. It is not medical advice, diagnosis, or treatment, and it does not create a doctor-patient relationship. Always talk to a qualified health care provider about medical questions or decisions. Never delay or ignore professional advice because of something you read on the Site. In an emergency, contact local emergency services right away.

Research is evolving, and information on the Site may be incomplete or out of date. Mentioning a treatment, product, study, clinician, or organization does not mean we endorse it. We cannot promise that any research will lead to a treatment or cure.

3. Using the Site

You may use the Site for lawful, personal, and non-commercial purposes related to our mission. You agree not to:

• Break any law or infringe anyone's rights

• Submit false, misleading, or fraudulent information, including false donation or registry information

• Submit information about another person, especially a child, unless you are their parent or legal guardian or have their permission

• Interfere with or disrupt the Site or its security, or try to access areas, accounts, or data you are not authorized to see

• Use bots, scrapers, or other automated tools to collect data from the Site, including family or donor information, without our written permission

• Use the Site to send spam, advertise, or solicit for other organizations or products

• Post or send anything unlawful, harassing, hateful, or harmful

We may restrict or end access to the Site for anyone who violates these Terms.

4. Family Registry and other forms

The HUWE1 Foundation Family Registry is a private database we use to stay connected with families. Information you submit is handled as described in our Privacy Policy. Joining the Family Registry does not enroll you in any research study, and it does not give you or your family any right to treatment, services, or funding. You are responsible for making sure the information you give us is accurate and that you have the authority to share it.

Research platforms we link to, such as RARE-X and COMBINEDBrain, are run by other organizations with their own terms, consent forms, and privacy practices. Your participation in them is governed by those terms, not these.

5. Donations

• Tax status. The HUWE1 Foundation is a 501(c)(3) tax-exempt organization [Charity ID: 42-3690671, confirm]. Donations are tax-deductible to the extent allowed by law. We will send a receipt for your records. We do not provide tax advice, so please talk to your own advisor.

• Use of gifts. Donations support our mission to advance research, support families, and accelerate treatments for HUWE1-related disorders. If a donor restricts a gift to a purpose we cannot fulfill, we will contact the donor, and if we cannot reach an agreement, we may use the gift for a similar purpose that fits our mission.

• Refunds. Gifts are generally non-refundable. If you made a donation by mistake or entered the wrong amount, contact us at hello@huwe1foundation.org within 14 days and we will review your request.

• Recurring gifts. You may cancel a recurring gift at any time by contacting us or using the link in your confirmation email.

• Payment processing. Payments are handled by [Squarespace Payments / Stripe / PayPal / other processor] under its own terms. We do not store full card numbers.

• Charitable solicitation notices. [Attorney to add any state-specific disclosures required where we solicit donations.]

6. Stories, comments, and other content you send us

If you send us a story, photo, quote, comment, or other material ("Submissions"), you confirm that you own it or have the right to share it and that it does not violate anyone's rights. We will not publish a Submission about a child or other person without the written permission of that person or their parent or guardian. You keep ownership of your Submission. By sending it, you give us a non-exclusive, royalty-free license to use, reproduce, and display it on the Site and in our materials for our mission, but only for the uses you approve at the time of submission or later in writing. You may ask us to remove it, and we will do so going forward, though we may not be able to recall materials already printed or shared. We may decline to publish any Submission.

7. Our content and intellectual property

The Site's text, graphics, logos, images, and design are owned by the HUWE1 Foundation or used with permission, and they are protected by copyright, trademark, and other laws. You may view and share Site content for personal, non-commercial, mission-related use if you keep our name and credit intact. You may not copy, modify, sell, or use our name or logo in a way that suggests our endorsement without our written permission. Scientific publications, images, and other content from third parties belong to their owners and may have their own terms.

8. Links to other sites

The Site links to third-party websites and services. We do not control them, and we are not responsible for their content, accuracy, or practices. A link is not an endorsement. Use them at your own risk and review their terms and privacy policies.

9. Disclaimers

The Site and its content are provided "as is" and "as available" without warranties of any kind, express or implied, including warranties of accuracy, completeness, fitness for a particular purpose, and non-infringement. We do not promise that the Site will be uninterrupted, error-free, or free of viruses or other harmful components.

10. Limitation of liability

To the fullest extent allowed by law, the HUWE1 Foundation and its directors, officers, volunteers, employees, and agents are not liable for any indirect, incidental, special, consequential, or punitive damages, or for any loss arising from your use of the Site or reliance on its content. Our total liability for any claim related to the Site will not exceed [$100]. Some places do not allow certain limits, so these may not fully apply to you. Nothing in these Terms limits liability that cannot be limited by law. [Attorney to review all of Sections 9 to 11.]

11. Indemnification

You agree to defend and hold harmless the HUWE1 Foundation from claims, losses, and expenses, including reasonable attorneys' fees, arising from your violation of these Terms, your Submissions, or your violation of someone else's rights. [Attorney to confirm whether to include this for a nonprofit consumer-facing site.]

12. Accessibility

We want the Site to be usable by everyone, including people with disabilities, and we aim to follow the Web Content Accessibility Guidelines (WCAG) [2.1 Level AA]. If you have trouble using any part of the Site, contact us at hello@huwe1foundation.org and we will work with you to provide the information in another way.

13. Copyright and other complaints

If you believe content on the Site infringes your rights, send us a notice at the address below that identifies the content, explains the claim, and gives your contact information. [Attorney to consider designating a DMCA agent if the Site hosts user content.]

14. Governing law and disputes

These Terms are governed by the laws of the State of Wyoming and applicable federal law, without regard to conflict-of-law rules. Any dispute related to these Terms or the Site will be brought in the state or federal courts located in [Teton County, Wyoming], and you agree to those courts' jurisdiction. [Attorney to confirm venue and whether to include informal dispute resolution or arbitration terms.]

15. Changes, ending access, and general terms

We may change these Terms or the Site at any time. We will post the updated Terms on this page with a new "Last updated" date, and your continued use means you accept them. We may suspend or end access to the Site at any time. If any part of these Terms is found unenforceable, the rest stays in effect. If we do not enforce a term, that is not a waiver of it. These Terms and our Privacy Policy are our full agreement with you about the Site.

16. Contact us

HUWE1 Foundation PO Box 1973, Jackson, Wyoming 83001

hello@huwe1foundation.org