Privacy Policy
Cure MAPT FTD | Effective date: June 16, 2026 | Last updated: June 16, 2026
Cure MAPT FTD (“we,” “us,” or “our”) is a 501(c)(3) nonprofit organization. This Privacy Policy explains what personal information we collect through our website at curemaptftd.org, how we use it, and your rights regarding that information. By using our website or submitting any form, you agree to the practices described in this policy.
- Information We Collect
We collect information you provide directly to us through our website forms.
Newsletter signup form:- First name
- Last name (optional)
- Email address
- Subscriber type (e.g., MAPT FTD Family, Researcher, Donor)
- Country
Contact form:- Name
- Email address
- Message content
Story submission form:- Any personal information you choose to include in your submission, which may include your name, your connection to MAPT FTD, and your story. Anonymous submissions are accepted.
We also automatically collect certain technical information when you visit our site through cookies and analytics tools, including pages visited, approximate location, browser type, and referring URLs. See Section 4 for details
- How We Use Your Information
We use the information we collect to:
- Send you our monthly newsletter and email updates about MAPT FTD research, events, and our organization, if you have subscribed
- Respond to your contact form inquiries
- Feature your story on our website, if you have submitted one and given permission
- Understand who our community is (e.g., which countries families are in, subscriber types) to improve our programs
- Analyze website usage to improve content and user experience
- Comply with our legal obligations as a 501(c)(3) nonprofit
We will not use your information for any purpose incompatible with the above without first asking for your consent.
- How We Share Your Information
We do not sell, rent, or trade your personal information. We may share your information only in the following limited circumstances:
- Service providers: We use Webflow to host our website and manage newsletter forms. Your information may be stored in Webflow’s systems on our behalf. We use Mailchimp (The Rocket Science Group, LLC) to send our newsletter and email updates. When you subscribe, your name, email address, subscriber type, and country are transferred to and stored by Mailchimp on our behalf. Mailchimp’s privacy policy is available at mailchimp.com/legal/privacy. These providers are contractually required to protect your information and may only use it to provide services to us.
- With your consent: If you submit a story, we may publish it on our website. We will confirm your permission before publishing any identifying information.
- Legal requirements: We may disclose information if required by law or if we believe in good faith that disclosure is necessary to protect our rights, protect your safety or the safety of others, or respond to a legal process.
Our website uses Google Tag Manager and related Google Analytics tools to understand how visitors use our site. These tools may set cookies on your browser to collect information such as pages visited, time spent on the site, geographic region, and how you arrived at our site. This information is collected in aggregate and is not used to identify you personally. You can opt out of Google Analytics by installing the Google Analytics Opt-out Browser Add-on available at: tools.google.com/dlpage/gaoptout.
Our website also uses the Facebook Pixel, a tool provided by Meta Platforms, Inc. The Facebook Pixel allows us to measure the effectiveness of our outreach and may be used to show relevant content or advertising to people who have visited our site when they are on Facebook and Instagram. The Pixel may collect information such as your IP address, browser type, and pages visited. Meta’s data practices are governed by Meta’s Privacy Policy at facebook.com/policy. You can opt out of interest-based advertising by visiting your Facebook Ad Preferences at facebook.com/ads/preferences, or through the Digital Advertising Alliance opt-out tool at optout.aboutads.info.
- Cookies and Analytics
Our website uses Google Tag Manager and related Google Analytics tools to understand how visitors use our site. These tools may set cookies on your browser to collect information such as pages visited, time spent on the site, geographic region, and how you arrived at our site. This information is collected in aggregate and is not used to identify you personally. You can opt out of Google Analytics by installing the Google Analytics Opt-out Browser Add-on available at: tools.google.com/dlpage/gaoptout.
Our website also uses the Facebook Pixel, a tool provided by Meta Platforms, Inc. The Facebook Pixel allows us to measure the effectiveness of our outreach and may be used to show relevant content or advertising to people who have visited our site when they are on Facebook and Instagram. The Pixel may collect information such as your IP address, browser type, and pages visited. Meta’s data practices are governed by Meta’s Privacy Policy at facebook.com/policy. You can opt out of interest-based advertising by visiting your Facebook Ad Preferences at facebook.com/ads/preferences, or through the Digital Advertising Alliance opt-out tool at optout.aboutads.info.
- Email Communications
If you subscribe to our newsletter, we will send you monthly updates. You can unsubscribe at any time by clicking the “unsubscribe” link in any email we send, or by contacting us at hello@curemaptftd.org. After unsubscribing, we will remove your email from our active mailing list, though we may retain your information as required for recordkeeping purposes.
- Data Retention
We retain your personal information for as long as necessary to fulfill the purposes described in this policy, or as required by law. If you ask us to delete your information, we will do so promptly unless we are required to retain it for legal or regulatory reasons.
- Your Rights
You have the right to:- Access the personal information we hold about you
- Correct inaccurate information
- Request deletion of your information
- Withdraw consent for email communications at any time
- Object to our processing of your information
To exercise any of these rights, please contact us at hello@curemaptftd.org. We will respond within 30 days.If you are located in the European Union or United Kingdom, you may have additional rights under GDPR or UK GDPR. If you are a California resident, you may have additional rights under the CCPA. Please contact us to exercise these rights.
Email: hello@curemaptftd.org
Mailing address: Cure MAPT FTD, 4035 East 18th Avenue, Denver, CO 80220
- Children’s Privacy
Our website is not directed at children under the age of 13, and we do not knowingly collect personal information from children under 13. If you believe we have inadvertently collected information from a child under 13, please contact us at hello@curemaptftd.org and we will delete it promptly.
- Security
We take reasonable measures to protect your personal information from unauthorized access, use, or disclosure. Our website is hosted on Webflow, which employs industry-standard security measures. However, no internet transmission is completely secure, and we cannot guarantee absolute security.
- Third-Party Links
Our website contains links to third-party websites, including research organizations, support groups, fundraising platforms (Zeffy, Rare Village), and social media platforms. We are not responsible for the privacy practices of these websites and encourage you to review their privacy policies.
- Changes to This Policy
We may update this Privacy Policy from time to time. We will post the updated policy on this page with a new effective date. We encourage you to review this policy periodically. Continued use of our website after changes are posted constitutes acceptance of the updated policy.
- Contact Us
If you have questions or concerns about this Privacy Policy or our data practices, please contact us:
Email: hello@curemaptftd.org
Mailing address: Cure MAPT FTD, 4035 East 18th Avenue, Denver, CO 80220
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