Terms of Use

Thank you for visiting the Spinal Muscular Atrophy Foundation Web site located at www.smafoundation.org (the "SMA Foundation Site"). The Spinal Muscular Atrophy Foundation ("SMA Foundation") has been formed to accelerate the development of a treatment for Spinal Muscular Atrophy ("SMA"), the number one genetic killer of infants and toddlers. The SMA Foundation Site is owned and operated by the SMA Foundation.

 

With respect to your access and use of the SMA Foundation Site, the SMA Foundation provides its services to you, subject to the following Terms of Use ("TOU"), which may be updated by the SMA Foundation from time to time without notice to you, and which updates become effective when posted. You are responsible for regularly reviewing these terms and conditions.

In addition, when using particular SMA Foundation web sites or services, you and the SMA Foundation shall be subject to any posted guidelines or rules applicable to such sites or services which may be posted from time to time. All such guidelines or rules are hereby incorporated by reference into these TOU. In the event that any of the terms, conditions, and notices contained herein conflict with such guidelines or rules, then these terms shall control.

 

You agree to be bound by these TOU, and indicate such agreement by any access or use of the SMA Foundation Site and services (the "Agreement"). If you do not agree to these TOU, do not access and use the SMA Foundation Site and services.

 

As a condition of your use of the SMA Foundation Site, you warrant to the SMA Foundation that you will not use the SMA Foundation Site for any purpose that is unlawful or prohibited by these TOU. You agree not to use the SMA Foundation Site in any manner which could damage, disable, overburden, or impair the SMA Foundation Site or interfere with any other party's use and enjoyment of the SMA Foundation Site. You may not obtain or attempt to obtain any materials or information through any means not intentionally made available or provided for through the SMA Foundation Site.

 

The information contained on the SMA Foundation Site is presented for the sole purpose of educating people about SMA, is provided for general use only, is not to be used in any respect for care or treatment decisions related to SMA, and does not offer personalized, patient-specific assistance, or other medical advice. The SMA Foundation strongly recommends that care and treatment decisions related to SMA only be made in consultation with a patient's physician or other qualified health care professionals, and the SMA Foundation advises users of the SMA Foundation Site that they should never disregard professional medical attention or advice because of something they read or otherwise access through the SMA Foundation Site.

 

ALL INFORMATION ON THE SMA FOUNDATION WEBSITE IS PROVIDED SOLELY ON AN "AS IS" AND "AS AVAILABLE" BASIS WITHOUT WARRANTY OF ANY KIND. WITHOUT LIMITING THE FOREGOING, THE SMA FOUNDATION MAKES NO REPRESENTATIONS OR WARRANTIES WITH RESPECT TO THE INFORMATION, SERVICES, PRODUCTS, MESSAGE OR CONTENT ON THIS WEB SITE. THE SMA FOUNDATION EXPRESSLY AND SPECIFICALLY DISCLAIMS ALL REPRESENTATIONS AND WARRANTIES, WHETHER EXPRESS, IMPLIED, OR STATUTORY, RELATING TO THE SMA FOUNDATION WEBSITE (AND ALL INFORMATION CONTAINED THEREIN) FOR ALL APPLICATIONS AND PURPOSES, INCLUDING BUT NOT LIMITED TO ANY REPRESENTATION OR WARRANTY REGARDING ACCURACY, COMPLETENESS, CURRENCY, RELIABILITY, NON-INFRINGEMENT, MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE.

THE SMA FOUNDATION ALSO PROVIDES NO ASSURANCE THAT THE PAGES THAT ARE ACCESSIBLE THROUGH THE SMA FOUNDATION SITE, OR THE SERVER THAT MAKES THEM AVAILABLE, ARE FREE OF VIRUSES, WORMS, TROJAN HORSES, OTHER HARMFUL ELEMENTS OR OTHER CODE THAT MANIFEST CONTAMINATING OR DESTRUCTIVE PROPERTIES AND ALL REPRESENTATIONS AND WARRANTIES RELATING TO SUCH MATTERS ARE EXPRESSLY DISCLAIMED.

YOU EXPRESSLY ASSUME ALL RISKS REGARDING YOUR USE OF THE SMA FOUNDATION WEBSITE AND ANY INFORMATION CONTAINED THEREIN.

 

YOU EXPRESSLY ACKNOWLEDGE AND AGREE THAT UNDER NO CIRCUMSTANCES, OR ANY THEORY OF LIABILITY, INCLUDING BUT NOT LIMITED TO BREACH OF CONTRACT, TORT OR NEGLIGENCE, WILL THE SMA FOUNDATION, OR ITS AFFILIATES AND PARTNERS, BE LIABLE FOR ANY INDIRECT, INCIDENTAL, SPECIAL, PUNITIVE, OR CONSEQUENTIAL DAMAGES (INCLUDING LOST PROFITS) THAT ARISE OUT OF OR ARE RELATED TO YOUR USE OF THE SMA FOUNDATION SITE. IN NO EVENT, REGARDLESS OF THE CAUSE OF ACTION OR THEORY OF LIABILITY SHALL THE SMA FOUNDATION'S AGGREGATE LIABILITY, OR THE AGGREGATE LIABILITY OF THE SMA FOUNDATION'S AFFILIATES AND PARTNERS, TO YOU FOR ANY LOSS, DAMAGE OR CLAIM RELATED TO OR ARISING OUT OF THE SMA FOUNDATION SITE EXCEED THE GREATER OF THE FOLLOWING: (A) TOTAL AMOUNTS PAID BY YOU TO THE SMA FOUNDATION FOR ACCESSING THE SMA FOUNDATION SITE; OR (B) TEN U.S. DOLLARS ($10.00).

 

If you post any content to the SMA Foundation Site, by electronic mail or otherwise, we will treat it as non-confidential and non-proprietary to you. By posting any content on the SMA Foundation Site, you authorize the SMA Foundation to use and allow others to use, distribute, and reproduce the content. The SMA Foundation reserves the right at all times to disclose any information as necessary to satisfy any applicable law, regulation, legal process or governmental request, or to edit, refuse to post, or to remove any information or materials, in whole or in part, in the SMA Foundation's sole discretion.

 

You agree that you will indemnify and hold harmless the SMA Foundation and its officers, directors, agents, employees, and volunteers from any and all claims, actions, suits, liabilities, costs, damages, and expenses, arising out of or related to your access or use of, or your inability to access or use, the SMA Foundation Site or the information, services, products or messages contained in the SMA Foundation Site or other web sites to which it is linked.

 

To the maximum extent permitted under applicable law, you hereby expressly release and forever waive any and all claims you may have against the SMA Foundation, its officers, directors, agents, employees, and volunteers for losses or damages you sustain in connection with your use of the SMA Foundation Site.

 

The name and mark, Spinal Muscular Atrophy Foundation, and its logos and taglines, are trademarks of the SMA Foundation and may not be used or reproduced without its prior written consent, which consent may be granted or withheld in the SMA Foundation's sole discretion.

 

Unless otherwise indicated, all information contained in the SMA Foundation Site is copyrighted and proprietary information of the SMA Foundation, and may not be reproduced, published, transmitted or distributed in any manner without the prior written consent of the SMA Foundation, which consent may be granted or withheld in the SMA Foundation's sole discretion. Materials available on the SMA Foundation Site in PDF format may be reproduced, but only without modification.

 

All of the content featured on the SMA Foundation Site, including text, graphics, images and illustrations is owned by the SMA Foundation, its licensors, vendors, agents, and/or content providers. All elements of the SMA Foundation Site are protected by trademark laws, copyright and moral rights. The SMA Foundation reserves the right to track the usage of the SMA Foundation Site's content.

 

Any third-party link contained on the SMA Foundation Site is provided for convenience only. The SMA Foundation makes no representation, warranty or endorsement to any of the information, services, or messages on any other Web sites which may be accessed through a hyperlink on the SMA Foundation Site.  Furthermore, the SMA Foundation is not responsible for the information or materials contained on Web sites linking to this Web site. The SMA Foundation does not check those links, nor does the SMA Foundation make any representations or warranties about those links. Any and all use of any Web site that is linked to the SMA Foundation Site is solely at your own risk.

 

You represent, warrant, and covenant that (a) you have the power and authority to enter into this Agreement; (b) you are at least eighteen (18) years of age; and, (c) you will only use the SMA Foundation Site in accordance with these TOU.

 

The SMA Foundation respects the intellectual property of others, and we ask you to do the same. If you believe some content on the SMA Foundation Site has been copied in such as way to constitute copyright infringement, please contact our webmaster at [email protected]

 

This Agreement and the use of the SMA Foundation Site shall be governed by the laws of the United States of America and the State of New York without regard to its conflicts of laws principles or any other principles that would result in the application of a different body of law. Those who choose to access the SMA Foundation Site from other locations do so at their own risk and on their own accord and are solely responsible for compliance with local laws.

 

If any provision of this Agreement is held to be invalid or unenforceable, such provision shall be struck and the remaining provisions shall be enforced. Headings are for reference purposes only and in no way define, limit, construe or describe the scope or extent of such section. The SMA Foundation's failure to act with respect to a breach by you or others does not waive its right to act with respect to subsequent or similar breaches. This Agreement and the terms and conditions contained herein sets forth the entire understanding and agreement between us with respect to the subject matter hereof, and supersedes any prior or contemporaneous understanding whether in written or oral form.

 

The Spinal Muscular Atrophy (SMA) Foundation (referred to herein as "SMA Foundation", "we" or "us") respects the privacy of users of the SMA Foundation Web Site and we are committed to protecting it. We recognize your need, as a user of this site, for appropriate protection and management of the personal information we learn about you while you visit our Web Site. This privacy policy lets you know how we use and protect that information. The information that we receive depends on what you do during your visit, and what service(s) you request.

 

This privacy policy discloses what information we gather about you when you visit our Web Site. It describes how we use that information and how you can control it.

 

This policy is effective as of January 1, 2011.

 

The SMA Foundation collects two kinds of information about visitors: 1) data that visitors volunteer by signing up to receive news, make a donation, complete surveys or request information; and 2) aggregated tracking data we collect when visitors interact with our Web Site.

 

When you request a service or information, make a donation, submit feedback or participate in a forum or survey, we may need to ask you for personal information such as your name, address, email address and telephone number. If you choose to provide us with information regarding a medical condition, we will use this information in conjunction with our use of your other personal information, as set forth in this privacy policy.

We do not send you information unless you request it or we believe that the information would benefit your business needs. If you do not want to receive further information from us, simply contact us at [email protected] and request to be removed from the Registration or contact list. Once we receive your request, we will use commercially reasonable efforts to remove your name from the contact list. If you wish to update any of your personal information, please contact us at such email address, and we will use commercially reasonable efforts to update your contact information accordingly. Please be aware, however, even if we update your personal information in our contact list, or we remove such information, it may still be stored in other databases (including those kept for archival purposes) and may still be used to compile aggregated or demographic information for supply to third parties in accordance with this privacy policy. It is our policy to not provide information that identifies you personally to a third party without your permission, except to process or fulfill your requests, or as otherwise set forth in this privacy policy.

 

We may collect information about our visitors, customers, page views, traffic patterns and related site information. This information helps us evaluate and improve our site and is sometimes useful for marketing and investment analysis. We may share this information with third parties, but only in aggregate statistical form that includes no personally identifying information.

 

Cookies are small files that many web sites place on your hard drive that allow such web sites to identify you. The use of cookies is a standard and common practice of many web sites. For example, if you allow a site to remember your login name or password, the site places a cookie on your computer. We may place cookies on your computer to allow us to identify you during future visits to our Web Site. We may use cookies to measure Web traffic, to offer you certain services and to customize your visit. However, if you do not wish to receive cookies, or want to be notified of when they are placed, your browser may permit you to do so. In many browsers, you can change the browser settings to warn you before accepting cookies or to block cookies. If you block cookies, you may not be able to use certain site features or functions, or the Web Site may not operate in an optimal mode.

 

Certain third party service providers that we use to enable us to provide the Web Site and related services may have access to your personal information. These third party service providers are required not to use your personal information other than to provide the services requested by the SMA Foundation. You expressly consent to the sharing of your personal information with our service providers for the purpose of providing such services.

 

If you choose to make a donation to the SMA Foundation through the Web site, we will request certain personal information and your credit card information (collectively, "Transaction Information") and the donation amount will be billed to your credit card. The Transaction Information is used only to process your transaction and is not shared with third parties except those who assist us with processing your donation transaction. By making a donation on our Web Site, you agree that we can share your Transaction Information with such third parties for this purpose. We do not retain your credit card information, but do retain a record of your donation transaction for administrative purposes.

 

We use reasonable security procedures to protect the information you share with us from unauthorized access or disclosure.

 

Our Web Site is not directed at children. Therefore, we do not wish to receive, nor do we knowingly collect personal information from minors.

 

Our Web Site may link to other web sites not controlled by the SMA Foundation. Although we try to be careful in the selection of our strategic service and technology partners, we are not responsible for the privacy or security practices of any other web sites, and you acknowledge and agree that any use of such other web sites is entirely at your own risk. You should carefully review the privacy and security practices of the other web sites before you provide such web sites with any of your personal information.

 

YOU EXPRESSLY CONSENT TO THE SMA FOUNDATION'S PROCESSING OF YOUR PERSONAL INFORMATION IN ACCORDANCE WITH THIS PRIVACY POLICY. YOUR PERSONAL INFORMATION MAY BE PROCESSED BY THE SMA FOUNDATION IN THE COUNTRY WHERE IT WAS COLLECTED AND IN THE UNITED STATES. UNITED STATES LAWS REGARDING PROCESSING OF PERSONAL INFORMATION MAY BE LESS STRINGENT THAN THE LAWS IN YOUR COUNTRY.

IF YOU REPRESENT AN ORGANIZATION, YOU WILL BE RESPONSIBLE TO ENSURE THAT EACH MEMBER OF YOUR ORGANIZATION (INCLUDING EMPLOYEES AND CONTRACTORS) ABOUT WHOM PERSONAL INFORMATION MAY BE PROVIDED TO THE SMA FOUNDATION HAS GIVEN HIS OR HER EXPRESS CONSENT TO THE SMA FOUNDATION'S PROCESSING OF SUCH PERSONAL INFORMATION.

 

Although your privacy is very important to us, due to the existing legal, regulatory, technical and security environment, we cannot fully ensure, nor do we represent or warrant, that your private communications and other personal information will not be disclosed to third parties. For example, we may be required to disclose your personal information to the government or other third parties under certain circumstances, or third parties may unlawfully intercept or access transmissions or private communications. Additionally, in the unlikely event we need to investigate or resolve possible problems or inquiries, we can (and you authorize us to) disclose any information about you (including personal information) to private entities, law enforcement or other government officials as we, in our sole discretion, believe necessary or appropriate. In all instances, we will cooperate fully when required by law to provide information regarding visitors.

 

We reserve the right to change this privacy policy at any time. If we update this privacy policy, we will place a notice on our Web Site indicating such update. You are responsible to review the updated privacy policy so that you are aware of our then-current privacy practices. If you object to any such changes, you must cease using our website. Continued use of our website following notice of any such changes shall indicate your acknowledgement of such changes and agreement to be bound by the terms and conditions of such changes.

 

If you have a question or comment about the SMA Foundation's Web Site, or wish to update your contact information or be removed from our contact list, please email us at [email protected]

 

Notwithstanding anything expressed or implied in this privacy policy, in connection with an assignment, sale, joint venture or other transfer or disposition of some or all of the assets of the SMA Foundation or its affiliated entities, you agree that we can accordingly assign, sell, license or transfer any information, including personal information, that you have provided to us to those third parties directly involved in the transfer or disposition of such assets.

 

This Privacy Policy is incorporated into and made part of the SMA Foundation Web Site Terms of Use, which can be found here