WALK to End Hydrocephalus® Participant Privacy Policy

March 8, 2022

We take protecting your privacy seriously. This privacy policy governs your use of the WALK to End Hydrocephalus® Participant Center website and mobile app ('WALK app'). The WALK app gives a user the ability to create and manage their WALK to End Hydrocephalus participant fundraising center.

These tools are not for medical care, advice, or treatment and should not be used in place of seeing a healthcare provider.

About this Policy

We are so appreciative of your commitment to supporting the WALK to End Hydrocephalus® and helping raise funds to support the mission of the Hydrocephalus Association. We take our obligation to protect your information and your privacy seriously.

This privacy policy seeks to explain to you in the clearest way possible what information we collect, how we use it and what rights you have in relation to it. We hope you take some time to read through it carefully, as it is important. If there are any terms in this privacy policy that you do not agree with, please discontinue use of the WALK app.

Should you have a question relating to our privacy policy and practices, please contact us:
Email: walk@hydroassoc.org
Phone: 301-202-3811
Toll Free: 888-598-3789
Fax: 301-202-3813

Mail: Hydrocephalus Association
4340 East West Highway, Suite 905
Bethesda, MD 20814

What information do we collect?

  • Personal identification information: When you download the WALK app for the first time, you will be asked to login to the app using your username and password that you created when you registered for your WALK to End Hydrocephalus® event.
  • Self-reported information: You have the option to enter information specific to your journey with hydrocephalus to personalize your fundraising page, both personal and team. This information includes any personal information you choose to share. This is all optional. You can choose to use the default text and photo provided by the Hydrocephalus Association when you register.
  • Supplemental information: You have the option to upload images or videos to enhance your personal participant or team page.
  • Web-behavior information: When you visit the WALK to End Hydrocephalus® event website, we collect information about the way you use the website through Google Analytics. We do this through the use of cookies and similar technologies (such as web beacons, tags, scripts and device identifiers). We use this information to help us customize and improve your experience and to gather aggregate information about our user base. We do not merge information collected through any Google advertising product with individual-level information collected elsewhere by our Service. Learn more about how Google collects and uses data here. To opt out of Google Analytics Advertising Features please use Google Ad Settings. To opt out of Google Analytics entirely please use this link.

Does the WALK to End Hydrocephalus® Mobile Application collect precise real time location information of the device?

This application does not collect precise information about the location of your mobile device.

How do we use your information?

  • We use your personal identification information to create, access, and manage an account in order to provide relevant services, in this case, access to your WALK to End Hydrocephalus® participant fundraising center.

WARNING: The Hydrocephalus Association is not responsible for information entered or altered by an individual you have given permission to access your account.

  • We use your personal identification information to communicate with you to provide technical support, notify you about changes in the WALK app and any related services or policies, and to keep you up to date on your registered WALK to End Hydrocephalus® event and the work of the Hydrocephalus Association.
  • We store your self-reported personal and supplemental information for you so that you can access it when needed. We do not access or use your self-reported information in any way apart from the summary detailed next.
  • We use summary statistics to manage our WALK to End Hydrocephalus® event participants and provide support for your participation in both fundraising and at the actual WALK event.

What information is shared with third party applications, marketers, or any other entities?

  • We do not share any of your personal identification information with third party applications, marketers, or any other entities.
  • You have the ability to authorize other individuals to access your WALK app data through a mobile device or website by providing them with your login information. We do not encourage this behavior. All such access to your WALK app data is solely in your control, as directed by you, through the provision of your secure username and password.
  • Aggregated, anonymized website and app data is periodically transmitted to external services such as Google Analytics to help us improve the application and our service.
  • We may disclose user-provided and automatically collected information:
    • as required by law, such as to comply with a subpoena, or similar legal process;
    • when we believe in good faith that disclosure is necessary to protect our rights, protect your safety or the safety of others, investigate fraud, or respond to a government request;
    • if the Hydrocephalus Association is involved in a merger, acquisition, or sale of all or a portion of its assets, you will be notified via email and/or a prominent notice on our website of any change in ownership or uses of this information, as well as any choices you may have regarding this information; or
    • with your consent.

International Transfer of Information

The Application uses Blackbaud to provide cloud-based storage of data. Blackbaud is headquartered in the United States of America. Any personal information you provide may be stored and maintained in a secure database in the United States. If you are a resident of a country other than the United States and provide us with your information, you consent to the transfer of your data into the United States. Blackbaud uses Standard Contractual Clauses (“SCCs”) or Model Clauses as a mechanism to provide appropriate safeguards for the protection of personal data for EU, UK, and Swiss data protection purposes. To read the Blackbaud Privacy Policy, please click here.

Data retention policy and managing your information

We adhere to the European Union Law, called the General Data Protection Regulation(GDPR), as well as California Civil Code Section 1798.83, also known as the “Shine The Light” law, regarding data retention and management. The basic rights granted under the GDPR are the following. Details as they pertain to the WALK app follow.

  • Right of Access – the right to be informed of and request access to the personal data we process about you;
  • Right to Rectification – the right to request that we amend or update your personal data where it is inaccurate or incomplete;
  • Right to Erasure – the right to request that we delete your personal data;
  • Right to Restrict – the right to request that we temporarily or permanently stop processing all or some of your personal data;
  • Right to Object –
    • the right, at any time, to object to us processing your personal data on grounds relating to your particular situation;
    • the right to object to your personal data being processed for direct marketing purposes;
  • Right to Data Portability – the right to request a copy of your personal data in electronic format and the right to transmit that personal data for use in another party’s service; and
  • Right not to be subject to Automated Decision-making – the right to not be subject to a decision based solely on automated decision-making, including profiling, where the decision would have a legal effect on you or produce a similarly significant effect.

Your user-provided data is retained in a secure database housed on servers owned and maintained by Blackbaud for as long as you use the Application. Transmission of data between the mobile app and the server is secured.

You can stop all collection of information by the WALK app by uninstalling the Application from your mobile device, asking all trusted authorized users to uninstall the app from their devices, and submitting a request to the Hydrocephalus Association to lock your account, which will restrict access via a web browser.

To uninstall the app, you may use the standard uninstall processes as may be available as part of your mobile device or via the mobile application marketplace or network. To request that we temporarily or permanently restrict all or some of your personal data via the website (Right to Restrict), please email walk@hydroassoc.org. Your User Provided data will not be permanently deleted from the database but, instead, continue to be stored so that you can access it at a future time, should you choose to do so.

You also have the right to request that we permanently delete all User Provided data from the database. Please note that after deleting your User Provided data, if you choose to interact with the Hydrocephalus Association again and participate in any future events hosted by the Association (WALKs, educational events, mobile apps, etc.), you will need to reenter all of your data. To request that we permanently delete all of your User Provided data, please email walk@hydroassoc.org.

You have the right to be informed of and request access to the personal data we process about you (Right of Access). Further, residents of California can request and obtain from us, once a year and free of charge, information about categories of personal information (if any) we disclosed to third parties for direct marketing purposes and the names and addresses of all third parties with which we shared personal information in the immediately preceding calendar year. If you would like to make such a request, please submit your request in writing to us using the contact information provided at the beginning of this document. Please note: As a reminder, we do not disclose information to marketers or third party entities apart from qualified research collaborators and industry partners. Should you find that we are using your data in a way that you do not deem appropriate, you have the right to object to us on grounds relating to your particular situation.

Keeping your personal data safe

If you are concerned about safeguarding the confidentiality of your information contained in the WALK app, please use the security features built into your mobile device, web browser(s), and computer, choose a unique and strong password to secure your account, and limit the sharing of your login information with others.

Changes to this Privacy Policy

This Privacy Policy may be updated from time to time for any reason. You can find any changes to our Privacy Policy posted here. You are advised to consult this Privacy Policy regularly for any changes, as continued use is deemed approval of all changes.

Your Consent

By registering for the WALK to End Hydrocephalus® and using the WLK app, you are consenting to our processing of your information as set forth in this Privacy Policy now and as amended by us. “Processing,” means storing data in sercure servers, on a computer/hand held device or using or touching information in any way, including, but not limited to, collecting, storing, deleting, using, combining and disclosing information, all of which activities will take place in the United States. If you reside outside the United States your information will be transferred, processed and stored in the United States.

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