Privacy Statement for ALS Performance Research Foundation

The ALS Performance Research Foundation ("the Foundation," "we," "us," or "our") is committed to protecting your privacy. This Privacy Statement explains how we collect, use, disclose, and safeguard your personal information when you interact with our website, participate in our research studies, donate to our cause, or otherwise engage with us. Please read this Privacy Statement carefully.

1. Information We Collect

We may collect the following types of information:

  • Personal Identification Information: This includes your name, address, email address, phone number, date of birth, and other similar identifiers you provide to us. For example, when you sign up for our newsletter, make a donation, or register for an event.

  • Research-Related Information: If you participate in our research studies, we may collect health-related information, medical history, genetic information, lifestyle information, and other data relevant to the study. This information is collected with your explicit consent.

  • Donation Information: When you make a donation, we collect your billing information, including your credit card details or other payment information. This information is processed by secure third-party payment processors.

  • Website Usage Information: We may automatically collect certain information when you visit our website, such as your IP address, browser type, operating system, referring URLs, pages viewed, and the dates/times of your visits. We may use cookies and similar tracking technologies to collect this information.

  • Communications Data: If you contact us via email or other means, we may keep a record of that communication.

  • Demographic Information: We may collect demographic information such as your age, gender, ethnicity, and other similar information, sometimes in an anonymized or aggregated form.

2. How We Use Your Information

We may use your information for the following purposes:

  • Research: To conduct and facilitate our research studies on Amyotrophic Lateral Sclerosis (ALS) and related conditions.

  • Donations: To process your donations, provide donation receipts, and manage our donor relationships.

  • Communications: To send you newsletters, updates about our research and activities, event invitations, and other information that may be of interest to you. You can opt-out of these communications at any time.

  • Website Improvement: To analyze website usage and trends, personalize your experience, and improve our website's functionality and content.

  • Event Management: To register you for events and manage your participation.

  • Responding to Inquiries: To respond to your questions, requests, and feedback.

  • Legal Compliance: To comply with applicable laws, regulations, and legal processes.

  • Other Purposes: For any other purpose we may notify you of specifically at the time of collection.

3. How We Share Your Information

We may share your information with the following categories of recipients:

  • Research Partners: We may share research-related information with our collaborators, including other research institutions, universities, and healthcare organizations, to conduct our studies. We will only share this information with your explicit consent and in a manner that protects your privacy.

  • Service Providers: We may engage third-party service providers to assist us with various functions, such as website hosting, data analysis, email delivery, payment processing, and other services. These service providers are contractually obligated to protect your information and only use it for the purposes we specify.

  • Legal Authorities: We may disclose your information to government authorities, law enforcement agencies, or other legal bodies when required by law or to protect our rights and the safety of others.

  • Affiliates: We may share information with our affiliates or related organizations that support our mission.

  • With Your Consent: We may share your information with third parties for other purposes with your explicit consent.

  • Aggregated and Anonymized Data: We may share aggregated and anonymized data that does not personally identify you with third parties for research, statistical analysis, or other purposes.

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

4. Data Security

We take reasonable and appropriate measures to protect your personal information from unauthorized access, use, disclosure, alteration, or destruction. These measures include:

  • Using secure server environments.

  • Implementing encryption and other security technologies for sensitive data.

  • Restricting access to personal information to authorized personnel only.

  • Regularly reviewing and updating our security practices.

However, please remember that no method of data transmission over the internet or electronic storage is completely secure. While we strive to protect your personal information, we cannot guarantee its absolute security.

5. Your Rights

You may have certain rights regarding your personal information, depending on your location and applicable laws. These rights may include:

  • Access: The right to request access to the personal information we hold about you.

  • Correction: The right to request that we correct any inaccurate or incomplete personal information.

  • Deletion: The right to request that we delete your personal information under certain circumstances.

  • Objection: The right to object to the processing of your personal information for certain purposes, such as direct marketing.

  • Restriction of Processing: The right to request that we restrict the processing of your personal information under certain circumstances.

  • Data Portability: The right to receive your personal information in a structured, commonly used, and machine-readable format and to transmit it to another controller.

  • Withdrawal of Consent: If we rely on your consent to process your personal information, you have the right to withdraw your consent at any time.

To exercise any of these rights, please contact us using the contact information provided below. We may require you to verify your identity before processing your request.

6. Cookies and Tracking Technologies

Our website may use cookies and other tracking technologies to enhance your browsing experience and collect website usage information. Cookies are small text files that are stored on your device. You can control the use of cookies through your browser settings. However, disabling cookies may affect your ability to use certain features of our website.

7. Links to Other Websites

Our website may contain links to third-party websites. We are not responsible for the privacy practices or the content of these websites. We encourage you to review the privacy statements of any third-party websites you visit.

8. Children's Privacy

Our website is not directed to children under the age of 13, and we do not knowingly collect personal information from children under 13. If you believe that we have inadvertently collected personal information from a child under 13, please contact us immediately, and we will take steps to delete the information.

9. Changes to This Privacy Statement

We may update this Privacy Statement from time to time to reflect changes in our practices or applicable laws. We will post any changes on our website and update the "Last Updated" date at the top of this statement. We encourage you to review this Privacy Statement periodically.

10. Contact Us

If you have any questions, concerns, or requests regarding this Privacy Statement or our privacy practices, please contact us at:

ALS Performance Research Foundation

P.O. Box 6538
Laguna Niguel, CA 92677

info@alsperformanceresearch.org

Phone: (949) 500-9055

Thank you for your support of the ALS Performance Research Foundation. Your privacy is important to us.