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Cure SMA operates its websites, located at and,  (collectively, the “Sites”).   Please read these Terms of Use (the “Agreement”) carefully before using any of the Sites.

1.  Applicability and Acceptance of These Terms of Use
By viewing, browsing, accessing or submitting content to any of these Sites, you indicate your agreement to these Terms of Use, without limitation.  The term “you” or “your” shall refer to any person or entity viewing, browsing, accessing or submitting content to any of these Sites.

If you do not agree to these Terms of Use, please do not use the Sites.  We reserve the right, at our discretion, to change, modify, add or remove portions of these Terms of Use at any time.  Please check these Terms of Use periodically for changes.  Your continued use of these Sites following the posting of any changes means you accept the Terms of Use and agree to be bound by any such modifications.

2.  User License  and Proprietary Rights
Unless otherwise noted, all materials, including images, illustrations, designs, photographs, videos, written and other materials contained on the Sites are copyrights, trademarks, trade dress and/or other intellectual properties owned or controlled by Cure SMA.  Without the explicit consent of  Cure SMA, no material from the Sites may be copied, reproduced, displayed, downloaded, modified, transmitted, distributed or in any way commercially exploited.  Any unauthorized use of materials contained on the Sites may violate copyright, trademark or other laws.

Cure SMA grants you permission, which may be revoked at any time, to view the Sites and to download, email, share, or print individual pages from the Sites in accordance with these Terms of Use and for your own non-commercial, personal use provided you do not remove any trademark, copyright or other notice contained on the pages.  No other use is permitted.

3.  Links to Other Sites
Cure SMA may provide links to other internet sites and may permit others to post links to other internet sites on its general pages or on certain public forums.

4.  Warranty Disclaimer; Limitation of Liability; Indemnification
The materials on the Sites are provided “as is” for general information only and without warranties of any kind, either express or implied.  Cure SMA disclaims any warranties of any kind, whether express or implied.  The material on the Sites are not meant to be used for self-diagnosis or to replace the services of a medical professional.  Cure SMA does not make any warranties as to the accuracy, completeness, or efficacy of any of the content, programs, materials, or other information provided in the Sites or by any of the third parties linked to or referred to in the Sites.  The Opinions and recommendations of third parties contained on the Sites are not necessarily those of the Cure SMA.  Cure SMA makes no representations or warranties of any kind that the functions provided by the site will be uninterrupted or error free, or that this site or the server that makes it available is free from viruses or other harmful components.

In no event and under no circumstances shall Cure SMA be liable to you or any third party for special, incidental, punitive or consequential damages arising out of your use or inability to use the Sites, your reliance or use of information from these Sites, or that result from mistakes, omissions, interruptions, deletions of files or other data loss, errors, defects, delays in operation, service or transmission of these Sites, even if we, or any of our authorized representatives, have been advised of the possibility of such damage.

You agree to defend, indemnify and hold harmless Cure SMA, its officers, directors, employees, and volunteers from any and all suits, actions, legal or administrative proceedings, claims, demands, damages, liabilities, and expenses arising out of or related to your access or use of, or your inability to access or use the Sites or other sites to which they are linked.

5.  Posted Content
You may post messages, texts, photos, testimonials or other content on the Sites.  Any content submitted will be treated as non-confidential and non-proprietary and you authorize Cure SMA and its affiliates, without compensation to you to copy, reproduce, incorporate, distribute, publicly display or otherwise use such information in furtherance of its operations in any format for the duration of any copyright or other rights in such content, and such permission may not be revoked for any reason.  By posting such content, you represent that you own or have the right to use and the right to permit Cure SMA to use such content.

6.  Privacy
Protecting your privacy is important to us.  Our Privacy Policy (see below) governs the collection, use, retention and disclosure of personal information gathered from the Sites.

7.  Term and Termination
These Terms of Use are effective from the date that you first access the Sites and continues in effect until terminated in accordance with these Terms of Use.

Cure SMA may suspend or terminate this Agreement or your access to the Sites at any time for any reason with or without notice to you.  You may terminate this Agreement at any time for any reason by delivering written notice in the manner provided below, which notice will be effective on the day the notice is received or such later date specified in the notice.

8.  Governing Law
These Terms of Use are governed by the law of the state of Illinois.  Any action arising out of any dispute with respect to this Agreement shall only be brought in the state and federal courts located in Cook County, Illinois.

9.  Notice
Cure SMA may give notice to you of any change or any other communication related to this Agreement through a general posting on the Sites, by electronic mail, or by conventional mail to your address.  You may give notice to Cure SMA by sending written notice to:

Attn: Communications Manager
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762

10.  Entire Agreement
This Agreement and the Privacy Policy referred to herein represent your entire agreement with Cure SMA regarding the Sites.

11.  Amendment
Cure SMA may amend this Agreement at any time by posting the amended terms on our Sites.  All amended terms shall automatically be effective upon posting.  By using this Site after the effective date of any such amendment, you agree to be bound by any such revisions and should therefore periodically visit this page to determine the then current Agreement to which you are bound.

If you have any questions regarding these Terms of Use, you may write to:

Attn: Communications Manager
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762

Last Updated: August 18, 2014

Cure SMA is committed to safeguarding your privacy.  This privacy policy (“Policy”) applies to the following sites:,, and each sub-domain associated with these URLs, (collectively, the “Sites”).  We have posted this Policy to describe our practices regarding the collection and use of information we receive from you.  This Policy does not apply to other sites that may be accessible through the Sites.  We encourage you to read the privacy policies of those other sites to learn how they collect and use information about you.

In order to fully understand your rights, we encourage you to read this Policy as well as our Terms of Use (see above).  This Policy may be updated from time to time, so we invite you to review this page periodically.  We will post the updated Policy on this webpage.  All changes will be effective immediately upon posting.  The new Policy will apply to all past and current users of the Sites and will replace any prior Policies.  By using the Sites, you consent to the terms of this Policy.

The Information We Collect
Cure SMA may collect two types of information about you:  “Aggregate Browsing Information” and “Personal Information”.

Aggregate Browsing Information
You can browse the Sites without revealing personal information that can be used to identify you.  Cure SMA may collect non-personal information such as your Internet Protocol (“IP”) address, the name of the domain you used to access the Internet, the Website you came from and the site you visit next.  To do this, Cure SMA may use cookies and other technology (see below).  However, Cure SMA does not associate any non-personal information with records containing any Personal Information submitted to us, so you remain anonymous when you browse the Sites.

Personal Information
Cure SMA may collect Personal Information such as name, address, email, connection to SMA, date of diagnosis, number of siblings, and type of care (eg., invasive or non-invasive), as it applies to each member.  By submitting such Personal Information to these Sites, you acknowledge that you have read this Policy, understand it, agree to its terms and authorize Cure SMA to collect, use and disclose Personal Information pursuant to the terms of this Policy.

We collect the following information about you in various ways, including when you visit our website or social media sites or when you contact us by phone, in person or by email.

If you choose to contact us and voluntarily disclose such information, we may collect the following information, including but not limited to:  your name, mailing address, email address, your connection to the Spinal Muscular Atrophy community, the date of diagnosis of the individual affected by Spinal Muscular Atrophy, the type of care the individual receives (non-invasive or invasive, for e.g.), and the number of siblings, if any.

If you donate to us via the Site, we collect the following information about you:  name, address, phone number, email address, billing information including credit card number and expiration date as well as the names, addresses and phone numbers of honorees on whose behalf you have donated, if any. We use your name, address, phone number, billing information/credit card information to process your donation or as otherwise described in this Policy.

If you visit our Facebook, Twitter, Instagram, or other social media pages, we may collect information you submit or make publicly available.

We also collect information automatically using technology when you visit our Sites or social media pages or when you open one of our e-mails.

Any information submitted to Cure SMA in conjunction with an abstract submission for the annual conference is not considered Personal Information.

Cookies and Related Technology
The Sites may contain cookies or similar technology.  A cookie is a piece of data that is sent to your internet browser, which will store the cookie on your computer if your computer is enabled to accept cookies, that helps a server identify and provide information about a browser when it’s used to visit a website.  We may also use cookies to better understand how our visitors use the Sites and to continue to improve our Sites and services.

While Cure SMA may use cookies to track your visit to the Sites, this information does not identify you personally and you remain anonymous, even if you have previously submitted Personal Information to Cure SMA through the Sites or otherwise.

Third parties whose websites are accessible through links on the Sites may also use their own cookies when you link to their site.  Cure SMA does not control these third parties’ use of cookies and cannot guarantee that they will uphold the same privacy standards as Cure SMA.  You should review the privacy policies of any third party sites that you visit through a link from the Sites to understand how they use cookies and the information they collect through cookies.

Special Notice Regarding Children Under 13
None of the content and information in the Sites is targeted toward children under the age of 13.  We make every effort possible to ensure that we do not collect information on our Sites from those we know to be younger than 13 unless parental consent has been obtained in writing.

Use, Disclosure, and Sharing of Information
Aggregate Browsing Information may be used for internal purposes to improve the design and use of the Sites. We use IP addresses to help diagnose problems with our server, administer our Sites, analyze trends, track user’s movement on the Sites, gather broad demographic information for aggregate use in order for us to improve the Sites, and deliver customized, personalized content.   This information may also be shared with Cure SMA grant recipients, content providers, sponsors, service providers or other third parties to advance the goals of research, education, dissemination of information and otherwise in fulfillment of the goals of Cure SMA.

Cure SMA uses Personal Information to assist in recruiting individuals into clinical studies and trials, providing aggregate disease statistics to third parties, providing de-identified individual patient disease information to third parties, contributing data to third party journal publications referring patients to specialized SMA clinical centers, and for such other internal purposes as Cure SMA deems necessary to fulfill its mission. Such third parties are obligated to maintain the confidentiality of Personal Information and are not authorized to use such information for any purpose other than its intended purpose.

Unless we have your consent or as required by law, Cure SMA will not share your Personal Information with any person or entity other than those affiliated with Cure SMA, entities acting on behalf of Cure SMA. Relevant third parties such as Cure SMA research grant recipients and research organizations or pharmaceutical companies working on research and treatments for SMA. By submitting Personal Information through the Sites or to a Cure SMA contact, you authorize Cure SMA to share this Personal Information for the purposes identified above.

Notwithstanding other provisions of this Policy, we may be required to provide Personal Information or Aggregate Browsing Information to respond to a valid court order, subpoena, government investigation, or as otherwise required by law.  We also reserve the right to report to law enforcement agencies any activities that we, in good faith, believe to be unlawful.  As such, we may release certain Personal Information when we believe that such release is reasonably necessary to protect the rights, property and safety of others and ourselves.

We also reserve the right to share, assign, sell, license or otherwise transfer your Personal Information to any of our affiliates, any successor in interest to our organization, or any third party working on SMA related research or treatments by assignment, sale, joint venture, merger, reorganization or other transfer, or by operation of law.

Except for the purposes and uses as expressly defined above, we will not sell, share or trade your Personal Information with any other entity, nor send mailings to you on behalf of other organizations.

Opt-Out Policy
If you do not want Cure SMA to disclose your Personal Information to third parties, you may opt-out by submitting a written request to:

Attn: Communications Manager
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762

If you opt-out, you may not be able to participate in the events or programs offered by Cure SMA.  Furthermore, you may not receive the information you requested, and Cure SMA may not be able to inform you of new programs, events, developments in research or services offered by Cure SMA.  Even in the event of an opt-out, Cure SMA may share non-personal, non-individual Aggregate Browsing Information with third parties.

Information Collected by Telephone, E-mail or Regular Mail
Cure SMA implements these same policies and procedures to protect the privacy of any Personal Information, including donor information, voluntarily submitted by you to Cure SMA via telephone, e-mail, regular mail or in person.  If you have any questions about any Personal Information provided by one of these off-line methods, you may contact us by email, regular mail or telephone using the contact information listed in this Policy.

Viewing, Updating, Changing or Removing Information
To view, update, change or remove your Personal Information, please submit your request in writing and send to:

Attn: Communications Manager
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762

Security Measures and Applicable Law
Cure SMA maintains commercially reasonable safeguards to ensure the security, integrity and privacy of the Personal Information provided by you. Date files are password protected and transferred through a secured ftp site.  However, we cannot guarantee that such security measures will be sufficient, will not be breached, and that your Personal Information may not be disclosed or otherwise accessed in an unauthorized manner.

Personal Information stored on the Sites will be collected, stored, and processed in the United States of America.  As such, Personal Information that is submitted to the Sites will be collected, stored, processed, disclosed and disposed of in accordance with applicable U.S. law.  If you are a non-U.S. user, you acknowledge and agree that we may collect and use your Personal Information and disclose it to other entities, as discussed above.  Such Personal Information may be stored on servers located in the U.S.  U.S. law may not provide the degree of protection for Personal Information that is available in your country.  By providing us with your Personal Information, you acknowledge that you have read this Policy, understand it, agree to its terms and consent to the transfer of information outside of your resident jurisdiction.

If you do not consent to the terms of this Policy, please do not use the Sites.  If you have already used the Sites and/or provided us with Personal Information, please send a written request to the contact person listed above to notify us on how you want us to handle your information.

Additional Information
If you have any questions about the Sites, this Policy or the information we collect, please contact us at:

Attn: Communications Manager
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762

LAST UPDATED:  February 11, 2020