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About Us

Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

Privacy Policy

Privacy Policy

Welcome to “Site”), which is operated by the Muscular Dystrophy Association, Inc. (“MDA”, “we”, “us” or “our”). This is the privacy policy (“Privacy Policy”) for the Site and all web pages and websites associated therewith together with any other features, functionality, documentation and services offered by us on or through the Site (e.g., online giving, posting features, blogs, apps, badges, etc.) (collectively, the “Services”). The Site and the Services are directed towards residents of the United States and its territories. Please review our Terms of Use Agreement which governs your use of the Services. Any capitalized terms that are not defined in this Privacy Policy shall have the meaning ascribed in the Terms of Use Agreement. By accessing, interacting with and/or otherwise using the Services and providing and/or otherwise making available your information to us, (a) you expressly choose to receive certain communications from us and, unless you otherwise indicate, third parties as described in this Privacy Policy and (b) you expressly agree to the privacy practices described herein.


1.1 This Privacy Policy explains what information we collect in connection with your access to and/or use of the Services, how the information is used, and how and when we disclose such information. Please take a few minutes to read this Privacy Policy so that you understand how we treat your information.

1.2 This Privacy Policy will remain in full force and effect, even if your access to, use of and/or participation in connection with the Services or any other particular service, feature, function or promotional activity offered on or through the Services terminates, expires, is suspended or deactivated for any reason. If you do not agree with this Privacy Policy, please do not participate in or use any Services. This Privacy Policy applies regardless of the device you use to access the Services and whether you are accessing the Services as a registered user (i.e., an end user with a User Account) or otherwise.

1.3 This Privacy Policy governs only the information collected by us on or through your use of the Services and does not cover any other information collected in any other manner or collected by any other third party, unless specifically stated. Where you have provided any of your information to third parties, including, but not limited to, marketing companies, advertisers and product/service providers, we may obtain such personal information and combine it with your Information (as defined in Section 1.4 below).

1.4 For purposes of this Privacy Policy, (a) when we use the term “Personal Information” we mean any information that we collect on or through the Services that would allow someone to identify you or contact you, such as your full name, address, e-mail address, physical address, payment card information, telephone number(s), etc., and (b) when we use the term “Additional Information”, we mean any information that we collect about you on or through the Services other than Personal Information (Personal Information and Additional Information shall be collectively referred to herein as “Information”).


2.1 Registration, Features, Functionality and Communications. In order to access and/or use the Services and certain content, features and functionality thereof (e.g., care services, communication/networking features, online giving, account registration, newsletters, etc.), we may require that you provide and/or otherwise make available to us certain Information, which may include, among other things, your legal name, email address, physical address/location, diagnosis and other descriptive information, and, in order to conduct fee-based transactions and other activities, your payment data (e.g., payment card data, PayPal account details, etc.), demographic information, authentication data and other information. Further, access to and/or use of certain content, features and functionality of the Services may be subject to Additional Terms, including, but not limited to, notices, requirements and settings, which may require that you provide certain Information about yourself in order to personalize and/or allow you to use these Services. In addition, you may be presented with the opportunity to sign up to receive additional newsletters, email communications, or other communications from us in order for us to provide up-to-date information and other news about the Services, and to publicize and promote certain events, content, initiatives and services offered by us, our business/organizational partners and other third parties, which may require that you provide, among other things, contact information such as name and email address, and, sometimes, demographic and other profile information.

2.2 Automatic Additional Information Collection; Tracking Technologies. When you access and/or use the Services, we automatically collect certain Additional Information, such as a unique device identifier assigned to your device (“UDID”), anonymous identifiers, your Internet protocol (IP) address, location data and other Additional Information regarding your access to and/or use of the Services, which may, among other things, assist us in authenticating your usage and/or device, keeping track of your preferences, creating a more tailored user experience, better serving your particular interests and needs, etc. In addition, the Services and/or third parties may use “cookies” (which are small data files containing information about you that is stored on your device), “embedded scripts”, web beacons and other similar tracking technologies (collectively, “Tracking Technologies”) to collect Additional Information automatically as you interact with the Services. Tracking Technologies enable us, among other things, to track your interaction with the Services, and target your interests to enhance your experience with the Services. We may also use Tracking Technologies to collect “clickstream” data, such as your device type, operating system and platform, the average time spent using the Services, content viewed and searched for, access times and other relevant statistics, and may assign unique identifiers to your device or other credentials you use to access and/or use the Services for the same purposes. We may associate the information obtained through these Tracking Technologies and your UDID, anonymous identifiers and other identifiers and data with your Personal Information so we can better customize your experience using the Services and provide tailored recommendations, advertisements, promotions and other content related to your specific interests, activities and/or profile.



3.1 We may use your Personal Information for the following purposes:

  • Providing any information, services or products that you request or purchase on through the Services;
  • Contacting you regarding the administration of any features or functions of the Services;
  • Sending you marketing, promotional and other e-mails and correspondence;
  • Acknowledging past donations and/or soliciting future donations;
  • Allowing you to participate in the support and other features of the Services;
  • Responding to your questions or other requests;
  • Tailoring your experience with the Services and/or otherwise customizing what you see when you use the Services;
  • Saving your User Account, registration and profile data or other Personal Information (so you are not required to have to re-enter it each time you use and/or access the Services);
  • Providing and/or otherwise making available the Services and any other information, products and services of enhanced value to you;
  • Marketing and promoting the Services, including promotions and other initiatives and activities;
  • Where you order goods or services, performing credit checking where relevant;
  • For the prevention and detection of fraud or infringement of our or any third party’s rights;
  • Tracking your return visits to and use of the Services;
  • To comply with legal obligations or legal process; and
  • For any other purposes described in this Privacy Policy or disclosed at the time you provide us with the Personal Information or which are reasonably necessary to provide the Service or other related information, product and/or service requested.

3.2 In addition, we may use your Additional Information for the following purposes:

  • For research purposes, marketing/promotional purposes and/or to provide anonymous de-identified reporting for internal and external clients, business partners, third party organizations, etc.;
  • Accumulating and reporting aggregate, statistical information in connection with the Services and user activity;
  • Determining which features, functionality and portions of the Services users like best to help us operate the Services, enhance and improve the Services and display advertising and marketing information;
  • Tracking your return visits to and use of the Services in order to enhance your experience while visiting the Site; and
  • For other purposes disclosed to you at the time you provide us with the Additional information or which are reasonably necessary to provide the service requested.


4.1 Preferences. You may change your privacy preferences (e.g., ask us not to share your Personal Information with a particular third party) by sending an email to us at detailing your privacy request. Other privacy preferences (e.g., limiting location services), depending on the nature of the specific feature, functionality or offering, may be designated by modifying your account privacy, permission and/or account options on the Services (if applicable) or your device (if applicable). If you ask us to stop using your Personal Information, we will honor that request while retaining a record of any Personal Information as necessary to comply with applicable foreign, federal, state or local law, and/or to conduct legitimate business activities; provided, however, that you may be unable to continue to use the Services (in whole or in part), if you require us to stop using your Personal Information. You always have the right to review and correct the Personal Information you have provided to us and generally you may update or delete (subject to our rights above) certain Personal Information by contacting us as described in Section 13.

MDA offers the following options for restricting use of your Personal Information:

  • Do not contact me by postal mail.
  • Do not contact me by phone.
  • Do not contact me by email.
  • Do not contact me by SMS.
  • Do not contact me with fundraising requests.
  • Do not contact me about Services.
  • Do not contact me.

4.2 Marketing and Promotional Communications. From time to time, you may be presented with the option of whether to receive, or you may be automatically entered to receive, certain marketing, promotional and/or fund raising communications from us and others that we think will be of interest to you. You can unsubscribe to receive certain such communications by either following the specific instructions included in such communications or you may “opt-out” of receiving certain marketing and promotional e-mails from us by sending an email to us at detailing your privacy request. Please note that “opt-out” and “unsubscribe” requests may not take effect immediately and may take a reasonable amount of time to receive, process and apply, during which time your Personal Information shall remain subject to the prior privacy settings. Additionally, you should be aware that any Personal Information provided to third parties prior to your election to opt out or unsubscribe cannot be retrieved or rescinded by us unless required by applicable law, and you cannot retroactively opt out or unsubscribe with respect to such third parties. Further, also please note that in order to keep you informed about the operation of the Services, we may always send you emails, notifications and announcements that are needed for the proper functioning and administration of the Services, including, without limitation, for the purposes described in Section 3 above, in connection with your use thereof. We may also have features that allow you to submit information, questions or feedback to us. In those instances, we may retain your emails and other information you submit to us for our internal purposes, and to help us, our service providers and affiliates serve you better.


5.1 Disclosure to Third Parties. We reserve the right to use, share, exchange, sell, rent, lease and/or disclose to third parties any of your Information for any lawful purpose, including, but not limited to, for the purpose of furthering our charitable mission and as may otherwise be described in Section 3 above, and your access to and/or use of the Services shall be deemed your express, affirmative “opt-in” consent to the foregoing. You can choose to opt-out of certain such uses as described in Section 4 above.

5.2 Co-Branded Services and Features. The Services may offer co-branded services and features, such as fund-raising events, initiatives and promotions provided by us and/or our affiliated organizations and entities or other third-party partners, and these co-branded services may be hosted on the Services and/or our co-branded partner's platform or website or service. The co-branded partner will be identified on the co-branded feature or service, along with the co-branded partner's privacy policy and use of your Information is subject to that co-branded partner's privacy policy. If you wish to opt-out of a co-branded partner's future use of your Personal Information for marketing or other purposes, you must contact the co-branded partner directly.

5.3 Service Providers. We may also disclose your Information to third parties for the purpose of administering and maintaining the Services (“MDA Service Providers”). We use MDA Service Providers to efficiently provide the full range of content, activities, services, features and functions we bring you and we disclose your Information to MDA Service Providers for the purpose of providing services to us and our affiliated companies, organizations and initiatives.

5.4 Additional Disclosures. There may be instances when we may access and/or disclose Information without providing you a choice in the following circumstances: (a) to protect or defend our legal rights or property, or those of our affiliated companies, organizations and initiatives, and their employees, agents and contractors (including enforcement of our agreements); (b) to protect the safety and security of the Services and our users; (c) protect against fraud or for risk management purposes; (d) if we believe your actions violate the Terms of Use Agreement, this Privacy Policy or any Additional Terms; or (e) to comply with law or legal process. In addition, if we sell or transfer all or a part of our business, organization and/or assets (or those of an affiliated company, organization or initiative), or all or a part of our business, organization and/or assets (or those of an affiliated company, organization or initiative) are otherwise involved in a merger or any other similar transaction, we may transfer your Information to the party or parties involved in the transaction as part of that transaction.

MDA does not publish the names of individual donors. An individual who donates to a participant in an MDA-related fundraising event (e.g., MDA Muscle Walk) may elect to include or exclude his or her name from the fundraising website page associated with the event participant.


We do not knowingly collect Personal Information from minors under 18 years of age without written consent from a parent or guardian. If you are under the age of 18 do not submit your Personal Information through the Site.


While no data transmission over the Internet is 100% secure from intrusion, we maintain commercially reasonable physical, electronic and procedural safeguards to protect your Personal Information. Our server uses Secure Socket Layer (“SSL”) encryption to protect information submitted via the forms on this site. SSL is the industry standard security protocol. All credit card information is protected in accordance with PCI standards. MDA does not store credit card data and bank information. All credit card transactions conducted by MDA, including donations, are compliant with the Payment Card Industry Data Security Standard (PCI DSS), a set of security standards designed to ensure that the acceptance, processing, and transmission of credit card information takes place in a secure environment. All off-line information is securely stored and is accessible only by authorized staff. However, regardless of our efforts, the network, and the device you use to access the Services, it is possible that third parties may unlawfully intercept or access transmissions or private communications over an unsecured transmission.


The Services may be linked to, rely on and/or be integrated with websites, applications, interfaces, services and platforms operated by other companies, including Third Party Services. The Services may also feature advertisements from other third parties. We are not responsible for the privacy practices of such websites, applications, interfaces, services and platforms operated by third parties that are linked to, rely on and/or integrated with the Services or for the privacy practices of third party advertising companies or otherwise. Once you leave the Services via such a link, access a third party application, interface, service or platform or click on or navigate to an advertisement, you should check the applicable privacy policy to determine, among other things, how they will handle any personally identifiable or other information that they may collect from you.

MDA obtains contact details and other personal information regarding media contacts and influencers from a variety of sources including Cision. If you wish to know more about how such information is collected and used, please refer to Cision’s privacy notice at

9. SMS Privacy Policy

This Privacy Policy (the “Policy”) governs how we treat the Personal Information that we collect and receive from you in connection with your use of the SMS Service (“Service”), which is made available to you through a third-party service provider.

We reserve the right to send you certain communications relating to the Service, such as announcements and administrative messages, without offering you the opportunity to opt-out of receiving them.

Intended audience
MDA requires that users of this service be limited to US and Puerto Rico residents only. Please see Section 6 for Minors.

SMS Terms of Service

Use of the MDA text message-based services (the “Service”) is subject to the following Terms of Service. These terms constitute a legal agreement (the “Agreement”).

  1. MDA will allow several different opportunities, such as a entering a phone number online, filling out a paper form etc., to opt-in to SMS services.
  2. MDA’s third-party service provider gives you the ability to opt out of the Service for any reason. You can opt out by texting “STOP”. After this, you will no longer receive SMS messages from us. If you want to join again, just sign up as you did the first time, and we will start sending SMS messages to you again.
  3. As always, message and data rates may apply for any messages sent to you from us and to us from you, and MDA is not liable for the cost of any such messages. You will receive recurring messages. If you have any questions about your text plan or data plan, it is best to contact your wireless provider.
  4. You understand that anyone with access to your mobile phone may be able to view the messages you receive when using the Service, and you agree that MDA will not be liable to you if this occurs.
  5. You understand that you are not required to consent to the Service to receive any other services from MDA.
  6. By agreeing to these Terms of Service and providing us with your mobile phone number when you opt in to the Service, you authorize MDA to contact you by text message at your mobile phone number using an automatic telephone dialing system or device, or any other computer assisted technology as applicable.


From time to time, we may modify this Privacy Policy to reflect industry initiatives, third party requirements or changes in the law, our Information collection, use and disclosure practices, the features and functionality of the Services, or technology, and such modifications shall be effective upon posting. Your continued use of the Services after we post a revised Privacy Policy signifies your acceptance of the revised Privacy Policy. It is therefore important that you review this Privacy Policy regularly to ensure you are updated as to any changes. If we materially change our practices regarding collection, use or disclosure of your Personal Information, your Personal Information will continue to be governed by the privacy policy under which it was collected unless you have been provided notice of, and have not objected to, the change.


It is your responsibility to give us current, complete, truthful and accurate information, including Personal Information, and to keep such information up to date. We cannot and will not be responsible for any problems or liability that may arise if you do not give us accurate, truthful or complete information or Personal Information or you fail to update such information or Personal Information. We will reject and delete any entry that we believe in good faith to be false, fraudulent or inconsistent with this Privacy Policy or our Terms of Use.


The Services are controlled, operated and administered entirely within the United States of America and its territories. If you do not reside in the United States and its territories, do not submit your Information through the Site. If you do visit, access, interact with and/or otherwise use the Services from a location outside the United States, please be advised that any Information you provide in connection with any such activity will be processed in and/or transferred to the United States of America, where privacy protections may not be as comprehensive as those in the territory or location where you interact with or otherwise use the Services. By using the Services, you affirmatively consent to this transfer, use and other administration of your Information as described herein.


If you have any questions about our privacy practices, concerns regarding misuse of personal data, or other inquiries related to the terms or conditions of this Privacy Policy, please contact:



Mail: Muscular Dystrophy Association, Inc.
Attn: c/o Privacy Officer
1016 W Jackson Blvd #1073
Chicago, IL 60607

For donor inquiries, please contact:



This document is the sole statement of the Privacy Policy for the Services and no summary, restatement or other version thereof, or other privacy statement or policy, in any form, including, without limitation, machine-generated, is valid.

This Privacy Policy was last modified January 2, 2024 and is effective immediately.

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