Please read this User Agreement before using this Service. We will collect no personally identifiable information ("Personal Information") unless you choose to provide that information to us. Personal Information is information that can be used to identify or contact you, such as your name and contact information, including email address. If you provide us with Personal Information, you may ask us to delete it at any time by emailing info@guthyjacksonfoundation.org.
1. Welcome to the NMOtion Website.
Please carefully review these Terms and Conditions of Use and any policies referenced in it, all of which are part of the NMOtion Website User Agreement (“User Agreement”). By accessing the NMOtion Website (“NMOtion” or the “Website”), you agree to be bound by this User Agreement.
If you do not agree to abide by all of the provisions contained in this User Agreement, you may not utilize the Website or the services offered on the Website. This includes both the informational portions of the Website and the opportunity to indicate your interest in being contacted by a third party clinical trial associate or otherwise in connection with a clinical trial which you learned about on an external Website.
The Website is the property of The Guthy-Jackson Charitable Foundation (“GJCF”). GJFC reserves the right to change the terms of this User Agreement and any services provided on the Website at any time without notice to you, and you agree to be bound by such changes. You agree to periodically review this User Agreement to determine whether you agree to any new terms, conditions and policies. Any changes to this User Agreement (including the policies) shall become a part of this User Agreement upon publication and shall apply as soon as they are posted to the Website. Any new features or functionality that augment or enhance the Website shall be subject to this User Agreement upon activation.
2. In General
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.
GJCF is not engaged in suggesting or recommending either (a) a particular course of treatment for any patient or (b) that participation in a particular clinical trial may be beneficial to a particular patient. GJCF is not a health care provider and is no substitute for treatment by a physician or other health care provider.
The Service depends on its users to input accurate and truthful information. GJCF does not independently verify the accuracy or truth of any such information unless the Website administrator is specifically notified about a potential problem. By entering into this User Agreement, you agree to input only accurate and truthful information when you use this Service.
By entering into this User Agreement, you agree that you will not use any device, software or routine to interfere with the proper working of this Website. You further agree that you will not take any action that imposes an unreasonable burden upon the infrastructure used to support the efficient operation of this Website.
The use of NMOtion by any individual or organization is entirely in the discretion of GJCF. GJCF reserves the right to discontinue NMOtion at any time, to limit its use, and to prohibit certain individuals, organizations or institutions from using NMOtion or any Services, in its sole discretion, and GJCF shall not be liable to anyone for any claim of loss or damage claimed to have resulted from GJCF’s exercise of such rights.
3. Visiting Users and Registered Users
Visitors to NMOtion may use the Website to locate external links to clinical trials for which they are potentially eligible. Visitors to the Website are responsible for contacting any such administrators to learn more about the clinical trials identified on the Website.
Any person may register on the Webiste, including persons diagnosed with NMO ("NMO Patients"), persons authorized by NMO Patients to utilize NNMOtion on their behalf, and persons wishing to assist in NMO research by participating in an NMO clinical trial. To become a registered user of the Website (a "Registered User"), a person must provide NMOtion with certain personal information, including name and email address. The personal information provided by you is subject to our Privacy Policy, which can be found here. Registered User information will not be disclosed to other Registered Users.
NMOtion will use Registered Users' contact information to provide them with information about NMO clinical trials, advocacy, and various public information outreach activities. Registered User status is granted solely at the discretion of GJCF, and GJCF reserves the right to decline Registered User status to anyone or to deny all or part of the Service to any Registered User. You agree that if you register with NMOtion, you will provide accurate, current and complete information about yourself and will maintain and update such information promptly if any of it changes. You agree that if any information you provide is inaccurate, not current or incomplete, NMOtion may prohibit your access to any or all sections of this Website.
4. Ownership and License Of Information On NMOtion
Except for your personal information and information provided by clinicaltrials.gov, all content contained on the Website (collectively, “Content”), such as text, graphics, logos, icons, images, audio and video clips, digital downloads, data compilations, and software, is the property of GJCF or the property of GJCF’s licensors or licensees, and the compilation of the Content on the Website is GJCF’s exclusive property, protected by United States and international copyright laws, treaties and conventions. All software used on the Website is the property of GJCF or the property of GJCF’s software suppliers and protected by United States and international copyright laws, treaties and conventions. Any trademarks, service marks, graphics, logos, page headers, icons, scripts and trade names (each, a “Mark”) contained on the Website are proprietary to GJCF or GJCF’s licensors or licensees. The Marks may not be used in connection with any product or service that is likely to cause confusion among users or that disparages or discredits GJCF or anyone else. All other Marks not owned by GJCF that appear on the Website are the property of their respective owners, who may or may not be affiliated with, connected to, or sponsored by GJCF. GJCF grants you a limited license to access and make personal use of the Website. No Content of the Website or any other Internet Website owned, operated, licensed, or controlled by GJCF may be copied, reproduced, republished, downloaded (other than page caching), uploaded, posted, transmitted or distributed in any way, or sold, resold, visited, or otherwise exploited for any commercial purpose, except that you may download one (1) copy of the Content that we make available to you for such purposes on a single computer for your personal, noncommercial, home use only, provided that you: (a) keep intact all copyright, trademark and other proprietary rights notices; (b) do not modify any of the Content; (c) do not use any Content in a manner that suggests an association with GJCF; and (d) do not download Content so as to avoid future downloads from the Website. Your use of Content on any other Website or computer environment is strictly prohibited. The license granted to you does not include, and specifically excludes, any rights to: resell or make any commercial use of the Website or any Content; make any derivative use of the Website or Content; download or copy account information for the benefit of anyone else; or use any form of data mining, robots, or similar data gathering and extraction tools. You may not frame, or utilize framing techniques to enclose, any Mark, Content or other proprietary information, or use any meta tags or any other “hidden text” utilizing any such intellectual property, without GJCF’s and each applicable owner’s express written consent. Any unauthorized use automatically terminates the license granted to you hereunder. You may not use any of our or any such party’s intellectual property as part of the link without our and each such party’s express written consent. To obtain permission to use any Content, please contact: info@guthyjacksonfoundation.org.
5. Links or Referrals to other Web Sites
Through this Website or through emails to Registered Users, NMOtion may refer you to other Websites. GJCF has no control over the information posted on those Websites and does not assume any responsibility for them. You should review the terms and conditions for use and the privacy policies of those Websites, which will govern your access and rights. You agree that you will not seek to hold GJCF responsible for any material related to or found on those Websites, or which you may link to or otherwise become aware of by those Websites.
6. Indemnification
You shall indemnify, defend and hold harmless GJCF, including GJCF’s trustees, Victoria Jackson and Bill Guthy, and the All Greater Good Foundation, and all of its and their affiliates, and members, trustees, directors, shareholders, officers, advisors, managers, employees, agents and licensors, from and against all losses, expenses, damages and costs, including reasonable attorneys’ fees, resulting from your use of NMOtion. We reserve the right to assume the exclusive defense of any claim for which we are entitled to indemnification under this Section. In such event, you shall provide us with such cooperation as is reasonably requested by us.
7. Disclaimers of Liability
GJCF its trustees and its and their affiliates and their respective members, directors, officers, managers, employees, agents and licensors are not liable for any damages in any way related to use of NMOtion, including incidental, direct, indirect, consequential, special, punitive, or exemplary damages of any kind, lost revenues or profits, loss of business or loss of data, or for any claim, loss or injury based on errors, omissions, interruptions or other inaccuracies, including, without limitation, as a result of breach of any warranty or other term of this User Agreement.
Any and all information provided through NMOtion is “as is,” and GJCF and NMOtion do not warrant or represent that any information provided by any third party through NMOtion is accurate or truthful. GJCF does not make any warranties, express or implied, with respect to the Service or any information offered through this Service. GJCF does not make any representations, nor does GJCF endorse the accuracy, completeness, timeliness or reliability of any material or data displayed, uploaded or distributed through this Service or available through links in this Service. Each user must independently verify the accuracy and truthfulness of the information received through NMOtion. GJCF does not warrant that NMOtion will be uninterrupted or error-free. GJCF reserves the right to correct any errors or omissions in this Service.
Although GJCF intends to and will take reasonable steps to prevent the introduction of viruses, worms, “trojan horses” or other destructive materials to this Service, GJCF does not guarantee or warrant that this Service or materials that may be downloaded from this Service do not contain such destructive features. GJCF is not liable for any damages or harm attributable to such features. Your use of this Service and/or download of information from it is at your own risk.
8. GJCF Financial Support of NMO-Related Clinical Trials
GJCF may provide financial support to one or more NMO clinical trials appearing on NMOtion. You hereby release GJCF from any claims you might have (1) that GJCF’s financial support of a NMO clinical trial identified through your use of NMOtion caused you harm in any way or (2) that you are entitled to compensation from GJCF or NMOtion in connection with GJCF’s provision of financial support to any such NMO clinical trials.
9. Use of NMOtion and The Guthy-Jackson Charitable Foundation brands
NMOtion is a product run and managed entirely by The Guthy-Jackson Charitable Foundation (GJCF), a nonprofit organization, to provide opportunities to develop programs for the prevention, clinical treatment, and eventual cure of NMO.
Investigators are encouraged to include a link to their trial on NMOtion through clinicaltrials.gov in materials related to the trial, including on the study Website or their institution’s Website, in a manner that provides a Web link to the listing but does not imply endorsement by GJCF or NMOtion, for example: “To learn more about this trial, please visit: (Insert URL here).” The appearance, position and other aspects of the link, URL, host Website, or other item in which the link or URL is included may not be such as to damage or dilute the goodwill associated with NMOtion and The Guthy-Jackson Charitable Foundation (GJCF) for Neuromyelitis Optica’s (NMO) Research name and trademarks. The appearance, position and other aspects of the link, URL, host Website, or other item in which the link or URL is included may not create the false appearance that any other entity is associated with or sponsored by GJCF or NMOtion. If the Web link is listed on a Website, the link, when activated by a user, must display this Website full-screen and not with a “frame” on the linked Website. Any statement or materials that use the NMOtion name, brand or trademark in any manner other than providing a Web link require approval by GJCF before being made publicly available.
The owner of any Website or materials with a hyperlink or URL to NMOtion agrees to the foregoing terms and agrees to delete any such link upon notice from GJCF that such permission has been revoked, which notice may be given at any time and for any reason. GJCF reserves the right to suggest altered text or positioning and to deny requests for use of name, brand or trademark. Use of The Guthy-Jackson Charitable Foundation name, brand or trademark by investigators whose trials are posted to NMOtion is not permitted unless special permission has been granted by GJCF. Individuals seeking approval of use of the NMOtion name can email the item using name, brand or trademark to info@guthyjacksonfoundation.org. You are responsible for complying with any applicable laws that may apply to you in using this Service.
10. Miscellaneous
GJCF may terminate this User Agreement for any reason at any time. The terms and conditions of this Agreement shall survive such termination for any disputes relating to it. Any portion of this User Agreement or published policy found by a court of competent jurisdiction to be unenforceable shall be severable and all other portions of this User Agreement and published policies shall remain in effect. This User Agreement shall be governed by the laws of the United States and the State of California, applicable to agreements made and to be performed therein without regard to conflict of laws principles, and you agree that the federal or state courts in California shall have exclusive jurisdiction over any dispute relating to this Agreement.
BY CONTINUING TO USE THIS SERVICE, YOU AGREE TO ABIDE BY THE TERMS OF THIS USER AGREEMENT.
NMOtion Privacy Policy
September 9, 2013
This Privacy Statement governs your use of the NMOtion Website (the “Website”) and related services (the “Service”). In this Privacy Statement, 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 STATEMENT 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.
Introduction
GJCF is committed to keeping the information you provide to us secure. We maintain physical, electronic and procedural safeguards that are designed to protect this information, and we have adopted internal policies that restrict access to and limit the use of this information.
Information We CollectInformation You Provide.
We collect personally identifiable 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, 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.
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. 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.
When you use the Website, we automatically record information from the computer or other device you use to access the Website (the “Device”), its software, and your activity using the Website. This may include the Device’s Internet Protocol (“IP”) address, browser type, the web page visited before you came to our Website, 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.
How We Use Information
Personal Information.
In the course of using the Website, we may collect personal information that can be used to contact or identify you and your account (“Personal Information”). Personal Information 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.
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.
How You can Help Protect Your Personal Information
The GJCF Website is a valuable information tool. The Website serves a critical need for all stakeholders in solving NMO and needs protection. You should review and comply with the provisions of the Terms of Use for the Website, which can be viewed here.
Changes to Privacy Statement
We will update this Privacy Statement as necessary to protect our users and to comply with a changing environment. We recommend that you check the Privacy Statement when you visit the Website to be sure that you are aware of and understand our current policy. 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 Statement.
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 and would like a copy of this notice, 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.
Changing Your Information
You can change, correct or delete your Personal Information by contacting info@guthyjacksonfoundation.org.
Contact Information
If you have questions or concerns about our application of this Privacy Statement 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.org.
