Terms of Use

Cure SMA operates its websites, located at www.cureSMA.org and  www.fsma.org,  (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: Marketing and Communications
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762
[email protected]

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: Marketing and Communications
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762
[email protected]

Last Reviewed: 8/14/2023

 

PRIVACY POLICY

This privacy policy (“Policy”) applies to the following sites: www.cureSMA.org, www.fsma.org, and each sub-domain associated with these URLs, (collectively, the “Sites”). Cure SMA respects the privacy of everyone visiting our Sites or using any of resources on our Sites.

This guide covers how we handle the personal information you provide us either directly on our Sites or indirectly, through software applications (including web, desktop, or mobile applications), data-capture devices and other websites, whether operated by third-party service providers or by us.

This Web Privacy Policy doesn't address, and we're not responsible for, the privacy, information, or other practices of any third party, including any third-party service provider or vendor, and any third-party operating software applications or websites linked on our Sites. Having such a link on our Sites does not imply that we or any of our affiliates endorse the linked application or website.

We may need to change this online privacy statement from time to time to address new issues relating to our Sites or the solutions or tools we provide on our Sites. We recommend you check this policy page regularly.

1. What is Personal and Protected Health Information?

Personal information and Protected Health Information (PHI) are data that identify you. We and our third-party service providers may collect personal information from you, including your:

  • Name
  • Location (including mailing address)
  • Telephone number
  • Email address

If you share any personal information with us or our third-party service providers, you're representing that you have the authority to do so.

2. How We Handle Your Personal Information

Our Web Privacy Policy also describes how we handle personal information you may provide when you visit our Sites.

We don't use or disclose personal information you give us online unless it's required or permitted under federal and state laws that apply to us. These laws closely regulate how we may handle your information.

Under these laws, we're permitted to use and disclose your personal information to support the services provided on our Sites, as well as our offline business functions.

We'll disclose information to government officials or others if we're legally required to do so. In addition, certain statutory authorizations allow us to disclose personal information in emergency situations or to protect our rights and property.

We also may disclose your personal information to our agents or business associates who perform various functions on our behalf, but we require these third parties to agree in writing to safeguard your information appropriately. 

We and our third-party service providers may use your personal information to:

  • Respond to your inquiries and fulfill your requests
  • Send you administrative information, including information regarding any solutions or tools we provide on our Sites and changes to our terms, conditions and policies
  • Allow you to share data from a tool or solution we provide on our Site to your friends
  • Personalize your experience on our Site by presenting products or offers tailored to you

In addition, we may use personal information you submit to our Sites to create aggregated, anonymous data, which we'll use to tailor our site to your interests, develop new features, and monitor the usage of our site. We may perform statistical analyses of these aggregate data and disclose the results as permitted by law.

3. How We Handle Your Protected Health Information (PHI)

Federal law requires that we publish a Notice of Privacy Practices describing how we handle our members' PHI collected both online and offline. You may want to read this Notice to learn how we process your PHI as well as what rights you have concerning such information.

We don't use or disclose any PHI you submit to our Sites or our tools and services unless it's required or permitted under federal and state laws that apply to us or our Sites.

These laws closely regulate how we may handle your PHI. Under these laws, we're permitted to use and disclose your PHI to support the services we provide on our Sites, as well as our offline business functions.

We may disclose your PHI to our agents or business associates who perform various functions on our behalf, but we require these third parties to agree in writing to safeguard your PHI appropriately. We don't sell or rent your PHI to third parties.

We'll disclose information to government officials or others if we're legally required to do so. In addition, certain statutory authorizations allow us to disclose personal information in emergency situations or to protect our rights and property.

We may use the PHI you submit to create aggregated, anonymous data, which we'll use to tailor our site to your interests, develop new features and monitor the usage of our site. We may also perform statistical analysis of this aggregate data and disclose the results as permitted by law.

We and our third-party service providers may use PHI to:

  • Respond to your inquiries and fulfill your requests, such as to send newsletters to you
  • Send you administrative information, including information regarding Cure SMA and changes to our terms, conditions, and policies
  • Personalize your experience by presenting products and offers tailored to you

In addition, we may use protected health information for our business purposes, such as quality improvement, data analysis, audits, new product development, service improvement, usage and trend identification, and promotional campaign effectiveness.

4. Other Information

In addition, we may collect a variety of other information types that aren't individually identifiable, including:

  • Type of browser you use
  • Files you request
  • Operating system you use
  • IP address from the pages you visited
  • URLs of the pages that you came from and go to
  • Geographic location from where you request information
  • Information collected through cookies, pixel tags and other technologies
  • Demographic information
  • Aggregated information

We may be required to share information you provide us through our Sites in other, limited circumstances in which we may share or transfer the information you provide us through our Sites, for example, to respond to judicial process, to comply with state, federal, or local laws, to protect the security or integrity of our databases or Sites, to take precautions against liability, in the event of a corporate reorganization or, to the extent required by law, to provide information to law enforcement agencies.

5. How We May Use and Disclose Other Information

Because other information isn't personally identifiable, we reserve the right to use and disclose other information for any purpose.

If we match other information with either personal information or PHI (such as your name and ZIP Code or your name and a medical condition), we treat the combination as personal information or PHI, as appropriate, as long as the information is combined.

6. Cookies

We use what are known as cookies to improve your experience on our site. Cookies are small pieces of data we place in your computer's browser to store your preferences.

Cookies themselves don't generate personal information about you. We don't attempt to link cookie data to your personal information. We use cookies only to improve your experience on our Sites.

If you choose not to accept cookies, you may be unable to take full advantage of our Sites’ features.

7. Mobile

This information by itself doesn't itself identify you to Cure SMA, though the information may be unique or consist of or contain details you consider personal.

If you use products and services that are location-enabled (for example, Google Maps) while accessing our Sites, tools, or services, you may be sending us your location information. This information may reveal your actual location, such as GPS data.

We may record your phone number when you:

  • Send it to us
  • Ask us to remember it
  • Make a call to us
  • Receive from us or send to us a text or SMS (short message service)

The information we collect for mobile may include:

  • Device or hardware IDs and device type
  • Type of request
  • Your phone carrier
  • Your carrier user ID
  • The content of your request
  • Basic usage stats about your device

Some of our products, tools, and services may allow you to download and/or personalize the content you receive from us. For these products and services, we record information about your downloads and preferences, along with any information you provide about yourself. 

8. Security

We've taken steps to protect information collected from our online visitors against unauthorized access and use.

We're committed to ensuring transaction security and privacy. 

As an additional security measure, we use a firewall to prevent unauthorized access to our site. Site personnel monitor activity logs at regular intervals to look for unauthorized intrusions.

In addition, our security protects our information and the supporting infrastructure against unauthorized use, disclosure, modification, damage, and loss. Our security measures promote a culture that understands and respects the value of protecting information while following legal, regulatory and accreditation requirements and standards that govern online security.

9. Links to Third-Party Websites

We may provide links and pointers to websites maintained by other companies or third-party websites. From time to time, we may provide materials from other parties or companies on our Sites.

Know that these third-party websites are independently owned and operated by someone other than Cure SMA. These websites have their own privacy practices and policies. We provide these materials and links to other websites "as is" and without warranties of any kind, either express or implied.

To the fullest extent permissible pursuant to applicable law, we disclaim all warranties, express or implied, including, but not limited to, implied warranties of merchantability and fitness. We don't warrant or make any representations regarding the use or the results of the use of the third-party materials on the third-party websites in terms of their correctness, accuracy, timeliness, reliability or otherwise.

10. Children's Information

None of the content and information on the Sites is targeted toward children. We make every effort to ensure that we do not collect information on our Sites from children without written parental consent.

Although parents are free to use our Sites on behalf of their children, we don't direct this site to children or knowingly collect personal information from children. We're pleased to work with parents and guardians to delete from our records personal information that a child may have disclosed improperly on our Sites.

11. Changes in our Corporate Status

We may disclose, transfer, or sell personal information collected through our Sites as an asset of the company in conjunction with due diligence for or completion of a merger, reorganization, or sale to a third party of our company or a major portion of its assets. Although we don't currently anticipate such an event, changes to our privacy policy might result.

12. Privacy Policy Changes

This Web Privacy Policy is effective 08/29/2023. We may change this policy page at any time without notice.

13. Your Privacy Rights and Choices

In the EEA, EU, Switzerland, New Jersey, Oregon, California, Colorado, and Delaware, you have specific rights regarding your Personal Information. This section describes your rights and explains how to exercise those rights. Subject to certain limitations (such as our legal obligations), you have the right to access, to obtain a copy of, to correct, to opt-out of the sale or sharing, and to delete your Personal Information. For personal data that we have about you, you may request the following:

  • Access/request a copy of your Personal Information
  • Opt out of sharing
  • Correction or deletion
  • Right to portability

If you wish to exercise one of these rights, please e-mail us at [email protected].

If you wish to delete your data, please email us at [email protected]. We commit to responding within 14 days of your request and will delete your data accordingly.

14. 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: Marketing and Communications
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762
[email protected]

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.

15. Contact Us

We're sincerely committed to protecting your personal privacy. While information is the cornerstone of our ability to achieve success in our organization’s mission, our most important asset is our community’s trust. Keeping information secure and using it in a responsible manner is a top priority for us.

If you have any questions or concerns about the information provided through this Site, please contact us:

Attn: Marketing and Communications
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
800 886-1762
[email protected]

Last Updated: 8/8/2024

Last Reviewed: 8/8/2024

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