Privacy Policy

Effective: March 20, 2026

1. Introduction

Dystonia Foundation ("Dystonia Foundation," "we," "us," or "our") — currently operating as Down with Dystonia — is a California nonprofit organization with 501(c)(3) federal tax-exempt status. We are committed to protecting the privacy and security of information you share with us when you visit our website or interact with our organization.

This Privacy Policy explains what personal information we collect, how we use and protect it, with whom we may share it, and your rights with respect to that information. By using our website, you agree to the practices described in this Privacy Policy.

2. Information We Collect

2.1 Information You Provide Directly

We collect personal information you voluntarily provide to us, which may include:

Contact form submissions: your name, email address, and message content
Newsletter and email list sign-ups: your name and email address
Volunteer and membership applications: your name, contact details, background, and any other information you choose to include
Donation and payment information submitted through our third-party donation processor, Donorbox (see Section 5 for details)

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2.2 Information Collected Automatically

When you visit our website, certain information is collected automatically through cookies and analytics tools, including:

IP address and general geographic location
Browser type, device type, and operating system
Pages visited, time spent on pages, and referring URLs
Interaction data such as clicks and navigation patterns

This information is collected primarily through Google Analytics. You may opt out of Google Analytics tracking by installing the Google Analytics Opt-out Browser Add-on available at https://tools.google.com/dlpage/gaoptout.

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2.3 Information from Social Media

Our website may include embedded social media features (such as Facebook or Instagram buttons or feeds). These third-party platforms may collect information about your visit in accordance with their own privacy policies. We encourage you to review the privacy policies of any social media platforms you interact with.

3. How We Use Your Information

We use the information we collect for the following purposes:

To respond to your inquiries and communications
To send you newsletters, updates, and other communications you have requested
To process donations and maintain donor records in compliance with applicable law
To evaluate volunteer and membership applications
To improve and optimize our website and communications through analytics
To fulfill our nonprofit mission of raising awareness, education, and advocacy related to Dystonia
To comply with legal obligations, including those applicable to 501(c)(3) organizations under federal and California law

4. Legal Basis for Processing (California Residents)

If you are a California resident, you have specific rights under the California Consumer Privacy Act (CCPA) and related regulations. As a nonprofit organization, certain CCPA exemptions may apply; however, we are committed to honoring your privacy rights. You may have the right to:

Know what personal information we collect, use, disclose, and sell (we do not sell personal information)
Request deletion of your personal information, subject to certain exceptions
Opt out of any future sale of personal information (we do not engage in this practice)
Non-discrimination for exercising your privacy rights

To exercise any of these rights, please contact us at the information provided in Section 9.

5. Third-Party Service Providers

We work with trusted third-party service providers to operate our website and programs. These providers have their own privacy policies governing their use of your information:

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Donorbox (Donation Processing)

All donation transactions are processed through Donorbox. When you make a donation, your payment information is submitted directly to Donorbox and their payment processors. We do not store your credit card or banking information on our servers. Please review Donorbox's Privacy Policy at https://donorbox.org/privacy for details.

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Mailchimp (Email Communications)

We use Mailchimp to manage our email newsletter list and send communications. When you subscribe to our mailing list, your name and email address are stored with Mailchimp. Please review Mailchimp's Privacy Policy at https://mailchimp.com/legal/privacy/ for details.

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Google Analytics

We use Google Analytics to collect anonymous website usage data. Google Analytics uses cookies to gather this information. Please review Google's Privacy Policy at https://policies.google.com/privacy for details.

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Social Media Platforms

Embedded social media content (e.g., Facebook, Instagram) is subject to the privacy policies of those platforms. We do not control the data collection practices of these third parties.

We do not sell, rent, or trade your personal information to any third parties for marketing purposes.

6. Data Retention

We retain your personal information for as long as necessary to fulfill the purposes described in this Privacy Policy, comply with our legal obligations (including IRS and California nonprofit recordkeeping requirements), resolve disputes, and enforce our agreements. Donation records may be retained for a minimum of seven (7) years in accordance with nonprofit accounting standards.

7. Security

We take reasonable administrative, technical, and physical measures to protect your personal information from unauthorized access, disclosure, alteration, or destruction. However, no method of transmission over the internet or electronic storage is completely secure. We cannot guarantee absolute security of your information.

8. Children's Privacy

Our website is not directed to children under the age of 13. 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 immediately at the information in Section 9 and we will take steps to delete such information.

9. Contact Us

If you have questions, concerns, or requests regarding this Privacy Policy or your personal information, please contact us:

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Dystonia Foundation (DBA Down with Dystonia)

Physical Address: 9740 Via Bella Vista, Kenwood, CA 95452

Mailing Address: P.O. Box 1126, Kenwood, CA 95452

Email: contact@downwithdystonia.org

Website: https://dystonia-foundation.org

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10. Changes to This Privacy Policy

We may update this Privacy Policy from time to time to reflect changes in our practices, legal requirements, or operational needs. When we do, we will update the Effective Date at the top of this document. We encourage you to review this Privacy Policy periodically. Your continued use of our website following any updates constitutes acceptance of the revised Privacy Policy.