NMO Stories Website Terms and Conditions of  Use

Effective Date:  July 3, 2019

Please read these Terms and Conditions of Use before using this Service.

Welcome to the NMO Stories Website.

These Terms and Conditions of Use (this “User Agreement”) apply to the NMO Stories Website (collectively, the “Website”), operated by The Guthy-Jackson Charitable Foundation (“GJCF”) and the services provided through the Website (“the Services”). By accessing the Site, you agree to be bound by this User Agreement and our Privacy Policy, located at our “Privacy Policy“).

Your access to and use of the Website and the Service are subject to all terms of use contained herein and all applicable laws and regulations.  If you disagree with any part of the provisions contained in this User Agreement or the Privacy Policy, you may not utilize the Site or the Service. 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 available to users who are at least 18 years of age.  By accessing and using the Website, you represent and warrant that (a) any and all registration information you submit is truthful and accurate; (b) you will maintain the accuracy of such information; and (c) your use of the Website will comply with and does not violate any applicable law, regulation, order or guideline.

GJCF reserves the right to change the terms of this User Agreement and any Services provided on the Website at any time and from time to time by updating this posting and the Effective Date noted above You should periodically review this User Agreement because they are binding on you.  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. 

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.

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 NMO Stories and the Website by any individual or organization is entirely in the discretion of GJCF.  GJCF reserves the right to discontinue NMO Stories at any time, to limit its use, and to prohibit certain individuals, organizations or institutions from using NMO Stories or any Services, in its sole discretion. 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.

Visiting Users and Registered Users

Visitors to NMO Stories 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 Website, including persons diagnosed with NMO (“NMO Patients”), persons authorized by NMO Patients to utilize NMO Stories 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 NMO Stories 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.

NMO Stories 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 NMO Stories, 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, NMO Stories may prohibit your access to any or all sections of this Website.  GJCF does not independently verify the accuracy or truth of any such information unless the Website administrator is specifically notified about a potential problem.

Ownership and License Of Information On NMO Stories

The design of the Site and all text, graphics, photographs, information, designs, 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 and may not be used except as permitted by these Terms of Use or with the prior written permission of the owner of such material 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, modified, 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.  You are responsible for maintaining the confidentiality of your account information and password and for restricting access to such information and to your computer.  You agree to accept responsibility for all activities that occur under your account or password.

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.

User Information

Other than personally identifiable information, which is subject to our Privacy Policy, and as otherwise provided in these Terms and Conditions, any material, information, suggestions, ideas, concepts, know-how, techniques, questions, comments or other communication you transmit or post to this Site in any manner (“User Communications”) is and will be considered non-confidential and non-proprietary. We may, but are not obligated to, monitor or review any User Communications. We shall have no obligation to use, return, review, or respond to any User Communications. We will have no liability related to the content of any such User Communications, whether or not arising under the laws of copyright, libel, privacy, obscenity, or otherwise. We retain the right to remove any or all User Communications that includes any material we deem inappropriate or unacceptable.

Submissions

You hereby grant to GJCF a royalty-free, perpetual, irrevocable, worldwide, non-exclusive right and license to use, reproduce, modify, adapt, publish, translate, create derivative works from, distribute, perform, and display all content, remarks, suggestions, ideas, graphics, photos, or other information communicated by you to us through this Website (a “Submission”), and to incorporate any Submission in other works in any form, media, or technology now known or later developed. We will not be required to treat any Submission as confidential, and may use any Submission in our business without incurring any liability for royalties or any other consideration of any kind, and will not incur any liability as a result of any similarities that may appear in our future business operations. Notwithstanding the foregoing, to the extent any Submission falls within the scope of the Privacy Policy, it shall be treated in accordance with the our Privacy Policy.

Inappropriate Material

You are prohibited from posting or transmitting any unlawful, threatening, defamatory, libelous, obscene, pornographic or profane material or any material that could constitute or encourage conduct that would be considered a criminal offense or give rise to civil liability, or otherwise violate any law. In addition to any remedies that we may have at law or in equity, if we reasonably determine that you have violated or are likely to violate the foregoing prohibitions, we may take any action we reasonably deem necessary to cure or prevent the violation, including without limitation, the immediate removal from this Website of the related materials. We will fully cooperate with any law enforcement authorities or court order or subpoena requesting or directing us to disclose the identity of anyone posting such materials.

In addition to the foregoing, you may not post or transmit in connection with this Website any material that:

•          you do not have the right to post, including proprietary material of any third party;

•          would constitute political campaign activity within the meaning of the Internal Revenue Code and IRS regulations and/or policies;

•          consists of unsolicited messages, chain letters or unsolicited commercial e-mail;

•          advocates illegal activity or discusses an intent to commit an illegal act;

•          is abusive, vulgar, obscene, pornographic, or indecent;

•          does not pertain directly to this Site;

•          threatens or abuses others, libels, defames, invades privacy, stalks, is obscene, pornographic, racist, abusive, harassing, malicious, threatening or offensive;

•          seeks to exploit or harm children by exposing them to inappropriate content, asking for personally identifiable information or otherwise;

•          infringes any intellectual property or other right of any entity or person, including violating anyone’s copyrights or trademarks or their rights of publicity;

•          violates any law or may be considered to violate any law;

•          impersonates or misrepresents your connection to any other entity or person or otherwise manipulates headers or identifiers to disguise the origin of the content;

•          advertises any commercial endeavor (e.g., offering for sale products or services) or otherwise engages in any commercial activity (e.g., conducting raffles or contests, displaying sponsorship banners, and/or soliciting goods or services) except as may be specifically authorized on this Site;

•          solicits funds, advertisers or sponsors;

•          includes programs which contain viruses, worms and/or Trojan horses or any other computer code, files or programs designed to interrupt, destroy or limit the functionality of any computer software or hardware or telecommunications;

•          disrupts the normal flow of dialogue, causes a screen to scroll faster than other users are able to type, or otherwise act in a way which affects the ability of other people to engage in real time activities via this Website;

•          includes MP3 format files;

•          amounts to a “pyramid” or similar scheme;

•          disobeys any policy or regulations established from time to time regarding use of this Website or any networks connected to this Website;

•          contains hyper-links to other sites that contain content that falls within the descriptions set forth above;

•          engages in deep-linking, in-line linking, mirroring or framing of any content of the Website without our prior express, written permission;

•          engages in systematic retrieval of data or other content from this Website or any of its content to create or compile, directly or indirectly, a collection, compilation, or directory without our written permission by use of scrapers or other tools,

•          violates the restrictions in any robot exclusion headers on this Website or bypass or circumvent other measures employed to prevent or limit access to this Website;

•          takes any action that imposes, or may impose, in our sole discretion, an unreasonable or disproportionately large load on the Website’s infrastructure;

•          uses this Website to engage in activities that violate any terms or conditions of any other network access provider or Internet service provider; or

•          engages in any other activity deemed by us to be in conflict with the spirit or intent of these Terms and Conditions.

Copyright Infringement and DMCA Policy

GJCF respects the intellectual property rights of others, and requests that users of the GJCF Website and Service do the same.    

 If You believe that Your work has been copied on the Website in a way that constitutes copyright infringement, please provide GJCF’s Copyright Agent with the information specified below in the form of a “Notification of Alleged Infringement.” It is GJCF ‘s policy to respond to clear Notifications of Alleged Infringement, and our policy is designed to make submitting Notifications of Alleged Infringement as straightforward as possible while reducing the number of Notifications that we receive that are fraudulent or difficult to understand or verify.  If You are concerned about the removal of or blocked access to your content, please provide GJCF ‘s Copyright Agent with a “Counter-Notification.”  The process specified below is consistent with that provided under the Digital Millennium Copyright Act (the text of which can be found at the U.S. Copyright Office Website at http://www.copyright.gov).

DMCA NOTIFICATION OF ALLEGED COPYRIGHT INFRINGEMENT

If You would like to submit a claim of copyright infringement, please substantiate each claim by sending GJCF’s registered Copyright Agent a Notification of Claimed Infringement at the email or mailing address below:  

info@guthyjacksonfoundation.org

Detail of what an effective Notification of Alleged Infringement must include is available at the U.S. Copyright Office Website at http://www.copyright.gov.

DMCA COUNTER-NOTIFICATION

If You elect to submit a Counter-Notification, please send the GJCF registered Copyright Agent a Counter Notification at the email or mailing address above.

Detail of what an effective Counter-Notification must include is available at the U.S. Copyright Office Website at http://www.copyright.gov.

Electronic Communications

When you visit the Website or send emails to us, you are communicating with us electronically.  You consent to receive communications from us electronically. We will communicate with you by email or by posting notices on this Website.  You agree that all agreements, notices, disclosures and other communications that we provide to you electronically satisfy any legal requirement that such communications be in writing.  You agree that we may send email to you for the purpose of advising you of changes or additions to this Website, about any of our Services, or for such other purposes as we deem appropriate.

Links or Referrals to other Web Sites

Through this Website or through emails to Registered Users, NMO Stories may refer you to or provide links to websites that are not owned, operated or controlled by GJCF.  All such links are provided solely as a convenience to you. If you use these links, you will leave this Site.  GJCF has no control over the information posted on those websites and does not assume any responsibility for them or make any representations or warranties regarding any other website, or any content, materials or other information located or accessible from such websites, or the results that you may obtain from using such websites. If you decide to access any other website linked to or from this Site, you do so entirely at your own risk.

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.

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 respective 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 (a)  your use of NMO Stories and the Website, including any data or information transmitted by or received by you; and (b) any unacceptable use of this Website, including any statement, data or content made, transmitted or republished by you which is prohibited by these Terms and Conditions.   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.

Disclaimers of Liability

YOUR USE OF THIS SERVICE AND/OR DOWNLOAD OF INFORMATION FROM IT IS AT YOUR OWN RISK. ANY AND ALL INFORMATION PROVIDED THROUGH NMO STORIES IS “AS IS,” AND GJCF AND NMO STORIES DO NOT WARRANT OR REPRESENT THAT ANY INFORMATION PROVIDED BY ANY THIRD PARTY THROUGH NMO STORIES 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 INCLUDING WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, OR NON-INFRINGEMENT OF INTELLECTUAL PROPERTY.. 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 NMO STORIES.  THE FOREGOING EXCLUSIONS OF IMPLIED WARRANTIES DO NOT APPLY TO THE EXTENT PROHIBITED BY LAW.   PLEASE REFER TO YOUR LOCAL LAWS FOR ANY SUCH PROHIBITIONS.

GJCF DOES NOT WARRANT THAT NMO STORIES 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.

YOU ARE RESPONSIBLE FOR COMPLYING WITH ANY APPLICABLE LAWS THAT MAY APPLY TO YOU IN USING THIS SERVICE.

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 NMO STORIES, OR THE WEBSITE, INCLUDING INCIDENTAL,  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, WHETHER BASED IN WARRANTY, CONTRACT, TORT OR ANY OTHER LEGAL THEORY AND WHETHER OR NOT ADVISED OF THE POSSIBILITY OF SUCH DAMAGES. THE FOREGOING LIMITATIONS OF LIABILITY DO NOT APPLY TO THE EXTENT PROHIBITED BY LAW. PLEASE REFER TO YOUR LOCAL LAWS FOR ANY SUCH PROHIBITIONS.

IN THE EVENT OF ANY PROBLEM WITH THIS SITE OR ANY CONTENT, YOU AGREE THAT YOUR SOLE REMEDY IS TO CEASE USING THIS SITE. 

GJCF Financial Support of NMO-Related Clinical Trials

GJCF may provide financial support to one or more NMO clinical trials appearing on NMO Stories. 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 NMO Stories caused you harm in any way or (2) that you are entitled to compensation from GJCF or NMO Stories in connection with GJCF’s provision of financial support to any such NMO clinical trials.

Use of NMO Stories and The Guthy-Jackson Charitable Foundation brands

NMO Stories is 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 NMO Stories 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 NMO Stories, 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 NMO Stories 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 NMO Stories. 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 NMO Stories 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 NMO Stories agrees to the foregoing terms and agrees to delete any such link upon notice from GJCF that 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 GJCF name, brand or trademark.  Use of The Guthy-Jackson Charitable Foundation name, brand or trademark by investigators whose trials are posted to NMO Stories is not permitted unless special permission has been granted by GJCF.  Individuals seeking approval of use of the NMO Stories name can email the request for such use to info@guthyjacksonfoundation.org.

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.