Privacy Policy

NMO Stories Privacy Policy

Effective Date: July 3, 2019

This Privacy Policy governs your use of the NMO Stories Website at www.nmostories.com and our related social media sites,  (collectively, the “Website”), operated by The Guthy-Jackson Charitable Foundation (“GJCF”) and the services provided through the Website (“the Services”). In this Privacy Policy, the terms “GJCF,” “us,” “we,” and similar references mean The Guthy-Jackson Charitable Foundation, and unless otherwise indicated, references to the Website include references to the Service.

PLEASE READ THIS PRIVACY POLICY CAREFULLY BEFORE USING THE WEBSITE.

The Website is an information service provided without cost to users to (1) provide information to the general public, caregivers and patients concerning Neuromyeltis Optica (“NMO”); (2) facilitate charitable donations to support NMO research and (3) ) provide information to the general public, caregivers and patients concerning current clinical trials in NMO.

We take the privacy, security and confidentiality of your information, including any personally identifiable information (“Personal Information” or “PII”) extremely seriously.  Accordingly, we take commercially practicable precautions to ensure the security and confidentiality of that information. We also want you to know what information we collect, why, and how we will treat it once collected.  Finally, we want you to be able to have control over your Personal Information so that if you need to update or to correct your information or want to opt-out of receiving certain communications, you can do that easily.  In short, this Policy is for you.  Please read it carefully.

Please note the arbitration provision set forth below, requiring you to arbitrate any claims you may have against GJCF on an individual basis.  ARBITRATION ON AN INDIVIDUAL BASIS MEANS THAT YOU WILL NOT HAVE, AND YOU WAIVE, THE RIGHT FOR A JUDGE OR JURY TO DECIDE YOUR CLAIMS, AND THAT YOU MAY NOT PROCEED IN A CLASS, CONSOLIDATED, OR REPRESENTATIVE CAPACITY.

CONSENT:

BY ACCESSING THE SITE AND/OR REGISTERING WITH US, YOU ARE CONSENTING TO THE COLLECTION, USE, DISCLOSURE, TRANSFER AND STORAGE OF PERSONAL AND NON-PERSONAL INFORMATION OR OTHER INFORMATION RECEIVED BY US AS A RESULT OF SUCH USE IN ACCORDANCE WITH THIS POLICY.

Information We Collect

We may collect and store personal information and non-personal that you provide to us via the Website or otherwise.

1.         Personal Information You Provide

Registration

We collect Personal Information that you give to us when you register on the Website or update your information, as well as information you enter on the Website or otherwise volunteer to us, request information or access certain features of the Website.  This information includes your name, email address, and telephone number. You can choose not to provide certain information, but then you might not be able to take advantage of the Service. We use the information that you provide for such purposes as responding to your requests, customizing future experiences for you, improving our operations, and communicating with you.

Purchases and Online Donations

We collect the following information through our secure online financial-transaction pages: name, address, zip code,  e-mail address, phone number, and credit card information. This personally identifiable information is used to complete purchases and to acknowledge receipt of your donation for tax purposes and to include you on our mailing list if you choose to join it.

When you send a donation in honor or in memory of someone and request that an acknowledgement be sent to another individual or a family, we will use the name and address of that individual or family for acknowledgement purposes only.

2.         Non-Personal Information Collected Automatically.

We receive and store certain types of information whenever you interact with the Website. For example, we use “cookies” and we obtain certain types of information when your web browser accesses this Website and other content served by us or on our behalf on other Websites. We may also automatically collect your Internet Protocol and referring Website addresses, browser type and domain name, information you search for on our Website, locale preferences, identification numbers associated with your Devices, your mobile carrier, date and time stamps associated with transactions, system configuration information, metadata concerning your Files, and other interactions with the Website . This information helps facilitate your online experience on the Website.

We may use “cookies” to track usage patterns on this Website, as well as to offer other functionalities. Cookies do not contain any personally identifiable information about you and therefore cannot be used to identify you personally. However, cookies assist us in tracking which of our features you like best and make it easier to use the Website. You have the ability to accept or decline cookies by modifying your browser. The Website may be used even if you disable the cookie function on your browser. However, if you disable cookies, some advanced and customized features or offerings may not be available to you.

Other Websites, Including Mobile Applications and Social Media Platforms:

If you use a social media platform or your mobile device (or other method of communication) to interact with the Website, that platform or application may have a specific privacy statement that governs the use of Personal Information related to it. For example, if you use a mobile application and your mobile device’s settings allow it, we may collect mobile location information from your device. If you have questions about the security and privacy settings of your mobile device, please refer to instructions from your mobile service provider or the manufacturer of your device to learn how to adjust your settings. We do not control the data collection or privacy practices any third-party platform through which you access our Website or contact us. You should review the privacy policy and terms of use of any third-party site before using or downloading any app and review and use available controls and settings on your device to reflect your preferences.

Our processing of your Personal Information is necessary to provide the services and features you have requested from us, and for the legitimate interests of our business and services.  By providing your Personal Information, you have given us consent to use it in accordance with this Privacy Policy.

How We Use Information

Personal Information

Personal Information that can be used to contact or identify you and your account is or may be used: (i) to provide and improve the Website, (ii) to administer your use of the Website, (iii) to better understand your needs, (iv) to personalize and improve your experience, and (v) to provide or offer software updates and product announcements. If you no longer wish to receive communications from us, please follow the “unsubscribe” instructions provided in any of those communications, or update your account settings information.

Analytics

We also collect some information (ourselves or using third party services) using logging and cookies, such as your IP address, which can sometimes be correlated with Personal Information. We use this information for the above purposes and to monitor and analyze use of the Website, for the Website’s technical administration, to increase the Website’s functionality and user-friendliness, and to verify users have the authorization needed for the Website to process their requests.

Sharing Your Information

We do not share any Personal Information with any person or entity other than those persons at GJCF who are authorized to deal with your account, other than as provided below.

We do not sell Personal Information. We consider this information to be a vital part of our relationship with you. We do not share with others, or sell or rent to others, any Personal Information provided to us through the Website, except with your consent or as described in this Policy.  Additionally, we seek to receive your consent before sharing your information.

Subsidiaries and Affiliates:  We may share your Personal Information with our subsidiaries and/or affiliates consistent with this Privacy Policy.  Our subsidiaries and affiliates will be bound to treat and to maintain any Personal Information in accordance with this Privacy Policy.

Agents, Consultants and Related Third Parties: We sometimes engage other companies to perform certain business-related functions on our behalf so that we can focus on our core business. In connection with services those partners provide for us, we may provide or otherwise give them access to certain Personal Information, but we authorize them to use this information only in connection with the services they are retained to perform.

Legal Requirements:  We may disclose your Personal Information if required to do so by law (including, without limitation responding to a subpoena or request from law enforcement, court or government agency) or in the good faith belief that such action is necessary (i) to comply with a legal obligation, (ii) to protect or defend our rights, interests or property or that of other customers or users, (iii) to act in urgent circumstances to protect the personal safety of users of the Site or the public or (iv) to protect against legal liability or potential fraud, in each case as determined in our sole discretion.

Other uses:  If we intend to use any Personal Information in any manner that is not specified herein, we will inform you of such anticipated use prior to or at the time at which the Personal Information is collected or we will obtain your consent subsequent to such collection but prior to such use. In short, we will honor the choices you make regarding your Personal Information and will inform you about any other intended uses of such information.

Accessing, Correcting and Updating Your Personal Information

You have the right to see information we hold about you, with some exceptions which are described in the privacy laws. If you would like a copy of your personal information, please contact our privacy officer at info@guthyjacksonfoundation.org. You may need to pay a processing fee.

You have the right to review and update your personal details.  If for any reason you are concerned that the personal information we hold is not correct, please visit our online services and, after logging into the Website using the “Sign In” menu on the home page, your personal information will be made available for review and change in the “My Account” section. Only you or, upon your request, our Website manager, may access your personal Information from our online services using your user ID and password. 

Security 

We have implemented information security measures that contain administrative, technical and physical controls that are designed to reasonably safeguard Personal and Non-Personal Information.  Even though we have taken and will continue to take significant steps to protect this information, no company, including us, can fully eliminate all security risks associated with Personal Information.

We use various security measures, including Secure Socket Layer (SSL) encryption technology, to protect information collected, transferred and retained.  If you elect to register on the Website, you will be asked to provide an email address and password.  You must provide a valid email address and password in order to create and maintain an account, as well as to access account information. We require passwords to consist of at least 8 characters, have an upper and lower case letter, and a special character. In order to help protect your personal information, you should be careful about providing your password to others and change it periodically. If you wish to update a password, or if you become aware of any loss, theft or unauthorized use of a password, please contact us at info@guthyjacksonfoundation.org.

Please be aware that we may store Personal Information or such information may be included in databases owned and maintained by our affiliates, agents or third party service providers. We take commercially reasonable steps to protect the security and confidentiality of all Personal Information  provided via the Site from loss, misuse, unauthorized access, inadvertent disclosure, alteration and/or destruction. However, no Internet or email transmission is ever fully secure or error free. In particular, email sent to or from the Website may not always be secure. Please keep this in mind when disclosing any Personal Information via the Internet or by email.

We do not and will not, at any time, ask you to provide your Personal Information in a non-secure or unsolicited email or telephone communication.  Identity theft and the practice currently known as “phishing” are of great concern to us. Safeguarding information to help protect you from identity theft is one of our priorities.  If you receive such an email, please contact us to bring it to our attention.  For more information about phishing, visit the Federal Trade Commission at http://www.consumer.ftc.gov/articles/0003-phishing

Choices Regarding Your Personal Information

You have several choices available when it comes to your Personal Information.  We will honor the choices you make regarding your Personal Information.  If you have registered on the Site, you will be able to sign in and update your account (including contact) information.  You may also write to us at the address provided herein and update your contact information or to change your subscription preferences. In addition, you may:

Limit the Personal Information You Provide: You can use the Website and limit the Personal Information you provide either by disabling cookies or by not registering an account with us. If you choose to limit the Personal Information you provide and/or to disable cookies, you may not be able to use certain functionalities of the  Website.

Manage your Subscription Preferences: We may send your information by email or text message. If you provide your mobile phone number and ask to receive information by text message, we may provide information in that manner.

Social Media & Other Public Platforms: You may also manage the sharing of certain Personal Information with us when you connect with us through a social media platform or application. Please refer to the privacy settings of the social media website or application to determine how you may adjust your permissions and manage the interactivity between us and your social media platform(s) or application(s). That said, we want you to be aware that when you post information to public forums, including publicly viewable social media platforms, that information will become available to all who access such platform pages. PLEASE BE EXTREMELY CAREFUL WHEN DISCLOSING ANY INFORMATION IN

CHAT ROOMS, FORUMS AND OTHER PUBLIC POSTING AREAS. WE ARE NOT RESPONSIBLE FOR THE USE BY OTHERS OF THE INFORMATION THAT YOU DISCLOSE IN CHAT ROOMS, FORUMS AND OTHER PUBLIC POSTING AREAS.

Linking To or From Another Web Site

The Website may contain links to other websites not operated or controlled by us (the “Third Party Sites”). The policies and procedures set forth herein do not apply to any Third Party Sites. The owners and operators of all Third Party Sites are responsible for all Personal Information and Non-Personal Information provided, collected, maintained, stored or otherwise disclosed on those sites, if any.  The links on the Website do not imply that we endorse or have reviewed the Third Party Sites, including their privacy policies, if any.  We strongly encourage contacting those sites directly for information on their privacy policies.

Do Not Track Signals

Please note that the Website does not support “Do Not Track” browser settings and we do not currently participate in any “Do Not Track” frameworks that would allow us to respond to signals or other mechanisms from you regarding the collection of your personal or non-personally identifiable information.

Children’s Privacy

Protecting the privacy of children is extremely important to us. The Website is a general audience website and is not directed at nor intended for use by children. We do not knowingly collect or intend to collect Personal Information from anyone who is under the age of 13.  If you are under the age of 13, you should not provide any Personal Information to us and you should use the Website only with the knowledge, permission and involvement of a parent or guardian.  We encourage parents and legal guardians to monitor their children’s Internet usage and to help enforce our Policy by instructing their children never to provide Personal Information through the Website without parental consent.  If you have reason to believe that a child under the age of 13 has provided Personal Information to us, please contact us and we will endeavor to delete that information from our databases.

Retaining Personal Information

We retain your personal information for so long as you are registered with us and for so long as it is necessary and relevant for our operations.   In addition, we may retain personal information from closed accounts to comply with national laws, prevent fraud, resolve disputes, troubleshoot problems, assist with any investigation, enforce our User Agreement and take other actions permitted or required by applicable national laws.  We will retain de-personalized information after you are no longer registered.     Information you have shared with others will remain visible after you unregister or delete the information from your own profile or mailbox, and we do not control data that other parties copied out of our Services.

Accessing the Website from Outside of the United States

If you are visiting the Website from outside the United States, please be aware that you are sending information (including Personal Information) to the United States where our servers are located.  We will hold and process your Personal Information and Non-Personal Information in accordance with privacy laws in the United States and this Policy.  Please note that privacy laws in the United States may not be the same as, and in some cases may be considered less protective than, privacy laws in other countries. Therefore, by providing your Personal Information, you consent to the use of your Personal Information for the uses identified in this Policy and to the transfer of your Personal Information to the United States as indicated above. 

Arbitration; Claims Must be Brought on an Individual Basis

By using the Website, you agree that any dispute in any manner arising out of or relating in any way to this Policy, its enforcement or interpretation, or because of an alleged breach, default, or misrepresentation in connection with any of its provisions, shall be submitted to binding arbitration with Judicial Arbitration and Mediation Services, Inc. (“JAMS”) in the Los Angeles, California area. ARBITRATION MEANS THAT YOU WILL NOT HAVE AND YOU WAIVE THE RIGHT FOR A JUDGE OR JURY TO DECIDE YOUR CLAIMS. Rights to the prehearing exchange of information and other discovery, as well as appeal rights, are more limited than were you to sue in court. 

This arbitration provision is equally binding on claims brought by us as on claims brought by you or others. Arbitrations will be conducted under the applicable JAMS rules. The parties to arbitration will have all the same claims, legal rights, and remedies in arbitration that would be available in court. A single neutral arbitrator shall be selected in accordance with the JAMS Streamlined Arbitration Rules, which shall provide you a reasonable opportunity to participate in the arbitrator selection. It is further agreed that any disputes as to whether the scope of this arbitration provision covers the claim will be submitted to the arbitrator, and not a court, for decision. The parties to arbitration will have full right to use legal counsel at their own expense. All costs of arbitration (including arbitrator fees) shall be paid by us, except if you bring the arbitration, you may be charged an initial filing fee that shall not exceed the filing fees that you would incur for bringing an action in court. You will not be required to pay fees and costs incurred by the opposing parties if you do not prevail in arbitration. In arbitration, the parties may conduct reasonable discovery and shall reasonably exchange non-privileged information relevant to the dispute. The arbitrator’s award shall be in writing and provide a written statement of the essential findings and conclusions. The arbitrator will not have the power to commit any error of law or legal reasoning, and the award may be vacated or corrected on appeal to a court of competent jurisdiction for any such error. As an exception to this arbitration provision, no one subject to the provision will be precluded from seeking remedies for disputes or claims less than $10,000 in the aggregate that can be brought in a court of competent jurisdiction.

ANY ARBITRATION SHALL BE CONDUCTED ONLY ON AN INDIVIDUAL BASIS AND NOT IN A CLASS, CONSOLIDATED, OR REPRESENTATIVE CAPACITY. It is expressly understood and agreed that neither you nor We are entitled to arbitrate or bring any dispute covered by this arbitration provision as a class, consolidated, representative, collective, or private attorney general action, and the arbitrator(s) will have no authority to proceed on a class, consolidated, representative, collective, or private attorney general action basis.  This means:

  • You cannot bring a claim as a plaintiff or class member in a class action, consolidated action or representative action.
  • The arbitrator cannot combine more than one person’s claim into a single case, and cannot preside over any consolidated, class or representative arbitration proceeding (unless we both agree to change this).
  • The arbitrator’s decision or award in one person’s case can only impact the person who brought the claim, not other GJCF customers, and cannot be used to decide other disputes with other customers.

If any part of the agreement to arbitrate in this section is found unenforceable, the unenforceable term will be severed and the remaining arbitration terms will be enforced (but in no case will there be a class, representative or private attorney general arbitration). In the event that any of the class action restrictions are ever deemed illegal or unenforceable, the illegally deemed or unenforceable restriction(s) shall be severed from this arbitration provision, and any class action shall be exempted from this arbitration provision and brought in court. This arbitration provision is subject to the Federal Arbitration Act, and may be enforced in any court of competent jurisdiction.

Data Protection Officer

For information and questions about the use of your personal information, you may contact our Data Protection Officer at:  info@guthyjacksonfoundation.org

Changes to Privacy Policy

We reserve the right to update, change, amend or modify this Privacy Policy from time to time as necessary to protect our users and to comply with a changing environment. We recommend that you check the Privacy Policy when you visit the Website to be sure that you are aware of and understand our current policy, and especially if you provide any Personal Information.  If we make material changes to this policy, or in how we use or collect your personally identifiable information, we will prominently post such changes prior to implementing the change. We will not make any retroactive material changes in how we handle previously collected personal information unless you allow us to do so, or unless we are legally required to do so, and in such a case we will email registered Website visitors’ information on material changes to this Privacy Policy.

This Policy was last updated on the date indicated above. Your continued use of the Website after any changes or revisions to this Policy become effective shall indicate your agreement with the terms of such revised and then-current Policy.

California Privacy Rights Notice

Under California Civil Code sections 1798.83-1798.84, California residents are entitled to ask us for a notice describing what categories of personal information we share with third parties or corporate affiliates for those third parties or corporate affiliates’ direct marketing purposes. That notice will identify the categories of information shared and will include a list of the third parties and affiliates with which it was shared, along with their names and addresses. If you are a California resident, to request either a copy of the PII maintained by us about you or to request a copy of the information disclosure provided by us during the preceding calendar year pursuant to Section 1798.83 of the California Civil Code, please submit a written request to the following address: 10525 Vista Sorrento Parkway, Suite 210, San Diego, CA 92121. In your request, please specify that you want a “Your California Privacy Rights Notice”. Please allow at least 30 days for a response.

Contact Information

If you have questions or concerns about our application of this Privacy Policy or if you would like to inform us about changes in your personal information (such as your address) you may email us at info@guthyjacksonfoundation