Privacy Policy

Parent Project Muscular Dystrophy (PPMD) maintains this website in order to provide you with information about our work, and to interact with us online. PPMD is committed to protecting your privacy. This policy describes the ways that personally identifiable and anonymous information about our online users and print subscribers is gathered, our information sharing practices, and how online users and print subscribers may request changes to the way this information is shared. PPMD may change this policy from time to time and will update this page accordingly.

To learn more about the Privacy Policy of The Duchenne Registry, click here.

Our general policy about collecting personal information

We do not ask you to submit personal information if you are just browsing our website. However, you may not be able to access all parts of the website or interact with us without supplying some personal information. If you choose to take advantage of some of our services, we will sometimes request personal information (information that allows us to identify you). For example, if you would like to join our mailing list, make an online donation, or contact us via our website, we will ask you to provide us with personal information including your name, address, telephone number, email, and other identifying information. If, at any time, you would like to review or request corrections to the information that has been submitted, please call us at 201-250-8440.

Subject to applicable law, you may have the right to object to the processing of your personal information, and have the information blocked, anonymized, or deleted, as appropriate. Please note that in cases of deletion, limited personal information will remain to document the request. The right to access personal information may be limited in some circumstances by local law. To exercise these right, please call us at 201-250-8440.

Why do you receive email from us?

If you received an email from us:

  • (a) your email address is either listed with us as someone who has expressly shared this address for the purpose of receiving our information, or
  • (b) you have registered or purchased or otherwise have an existing relationship with us.

We respect your time and attention by controlling the frequency of our mailings.

How we protect your privacy

We use security measures to protect against the loss, misuse, and alteration of data used by our system. PPMD goes to great lengths to protect the confidentiality and integrity of any personal information you share with us over the Internet. PPMD treats personal data such as credit card information as critical assets that must be guarded at all times against loss and unauthorized access. To ensure the security of credit card and personal information, this website employs industry-standard security methods, including the Secure Socket Layers (SSL) protocol for the encryption of transmitted data.

Sharing and Usage

We will never share, sell, or rent individual personal information with anyone without your advance permission. Information submitted to us is only available to staff managing this information for purposes of contacting you or sending you emails based on your request for information and to contracted service providers for purposes of providing services relating to our communications with you.

How can you stop receiving email from us?

You may unsubscribe from our e-newsletters or updates at any time through the unsubscribe link at the footer of all email communications. If you have questions or are experiencing problems unsubscribing, please contact us at

Anonymous Data Collection and Use

To maintain our website’s high quality, we may use your IP address to help diagnose problems with our server and to administer the website by identifying which areas of the website are most heavily used, and to display content according to your preferences. Your IP address is the number assigned to computers connected to the Internet. This is essentially “traffic data” which cannot personally identify you, but is helpful to us for marketing purposes and for improving our services. Traffic data collection does not follow a user’s activities on any other websites in any way.

Use of “Cookies”

We may use the standard “cookies” feature of major web browsers. We do not set any personally identifiable information in cookies. You may choose to disable cookies through your own web browser’s settings. However, disabling this function may diminish your experience on our website and some features may not work as intended.

Targeted Social Media Advertisements

We may use the data you provide to us to run social media advertisements and / or create look-alike audiences for advertisements.

Third party websites

In order to provide our users with the most current information, we offer links to other websites to support the content we post on our own website. Anytime you leave the PPMD website, we have no control regarding what information may be collected about you, nor can we control what third parties might do with the information. We are not responsible for, and have no control over, the information collection or privacy practices of other websites. Each website should have its own privacy policy applying to information/transactions that take place. It is important that you review any privacy policies on third-party sites carefully, BEFORE you use any services or programs offered. If you cannot find or do not like a website’s privacy policy, you may choose not to offer information to that site.