Privacy Policy & Terms of Use


Privacy Policy

Pompe Warrior Foundation (“the Foundation”) respects the privacy interests and preferences of our website visitors. We are committed to full transparency in outlining what information we collect about visitors, how it is used and how you can opt-out of those programs if you so choose.

Personal contact information we collect and what we do with it

When you are making a donation, submitting an inquiry, completing surveys or subscribing to our electronic communications, the Foundation asks you for personal contact information such as your name, mailing address, phone number and email address. We may use this contact information to provide you with a receipt or financial report; to contact you to clarify or obtain information about a donation you made, to respond to an inquiry, to provide you with requested information or documentation, or to send you additional information about the Foundation or opportunities we think may be of interest to you.

If you make a donation, we may contact you from time to time to thank you for your gift, to offer you an opportunity to volunteer or attend an event or to make another gift. We will always give you the opportunity to opt-out of future communications from us.

Personal contact information may also be shared with certain vendors, i.e., reputable companies we use for services such as sending Foundation mail, or providing technology, services, data analysis, research, advertising and marketing assistance and/or content for the operation and maintenance of the Foundation Web Sites. We have confidentiality agreements in place with all such companies to protect your privacy.

The Foundation discloses personal information to third parties in aggregate form, that is, in a manner that cannot be traced back to you. For example, the Foundation might tell a sponsor how many females have visited the Site over a period of time. In these cases, information is only provided after personally identifiable information such as name, address, telephone number, or email address has been removed.

We want to be very clear: We will not obtain personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. Except as might be required by law, we do not share any personally identifying information we receive with any outside parties. The privacy laws of the State of Minnesota will govern. We will retain your personal data for a reasonable period of time as long as the purpose exists for which the personal data have been collected or longer if required by applicable law.

In the event of a corporate change in control resulting from, for example, a merger with, another entity, the Foundation reserves the right to transfer your Personal Information to the new party in control or the party acquiring assets. In the event of such a change, your Personal Information will continue to be treated in accordance with this Privacy Policy unless any changes to the Privacy Policy are made in accordance with the section below that discusses “Changes to This Privacy Policy.”

Personal billing information we collect and what we do with it

In addition to personal contact information, we ask for billing information, such as your billing address and credit card number, when you make a donation. We use secure servers to gather and process your billing information. These secure servers are hosted by our agent, PayPal, which is bound by our site policies. Your billing information is not shared with any other organizations, and your credit card number is not retained once your transaction has been authorized and processed.

Other contact information we collect and what we do with it

In some instances, we ask for contact information for people other than yourself including, for example, the mailing address of someone you wish us to notify of a donation you have made.  The information we collect is used to send the donation notification or information you requested and/or to inform the recipient of the opportunity to subscribe to receive Foundation updates and opportunities to get involved. Such contact information is not shared with any outside parties.

How to view or change your information

If you wish to opt out of future electronic communications from the Foundation, you may contact us at the address and email address below. Also, with the exception of credit card numbers, which are not retained, you can view and request changes to all the information you have given us, including any mailing lists you may be on, by contacting us at the address provided below.

In addition, if you have subscribed to Foundation electronic communications, you can unsubscribe by clicking on the unsubscribe link featured at the end of the communication.

Normal browsing

The Foundation does not collect any personally identifying information from you when you visit our website unless you choose to provide such information to us.

You can browse the Foundation website without telling us who you are or revealing any information about yourself. The information we gather during normal browsing comes from two sources: (1) standard server logs collect information such as the IP (Internet Protocol) address, domain name, browser type, operating system and information like the site that referred you to us, the files you downloaded, the pages you visited and the dates/times of those visits; and (2) if you have come into the website from one of our newsletters or from a site that has requested a link, we will ask your browser to accept a “cookie” (defined below) that carries a general marketing source code with you as you browse through the website, in order to help us match referring sites to donations made. This cookie does not capture or hold any personally identifying information about you, and is deleted when you end your session by leaving our website or closing your browser.


When you visit our website, we might store some information on your computer in the form of a “cookie” (i.e., a small piece of data that stores information on your browser in your computer’s hard drive) or similar file. We use conversion tracking cookies as part of campaigns in order to analyze trends, gather broad demographic information and monitor website traffic patterns that can help us further develop and improve the design and functionality of our site.

Google Analytics Features

Our website has implemented the Google Analytics Advertising Features, “Display and Search Remarketing” and “Advertising Reporting Features,” in order to advertise online (which we do) via Google’s “Remarketing” feature.  Third-party vendors, including Google, may show our ads on websites across the Internet.   We and third-party vendors, including Google, use first-party cookies (such as the Google Analytics cookie) and third-party cookies (such as the DoubleClick cookie) together to inform, optimize, and serve ads based on someone’s past visits to our Website.  See Google Analytics Terms of Service for more information:

Visitors can opt-out of Google’s use of Cookies and Google Analytics for Display Advertising by using the Ads Settings found here:

Links to other sites

This website contains links to other sites, including ones that may gather personal contact information. The Foundation is not responsible for the privacy practices or content of such websites. However, any personal information obtained by us through other sites is treated as if it was gathered on our site and our privacy policy applies.


We are committed to protecting the privacy of children. You should be aware that this Site is not intended or designed to attract children under the age of 16. We do not collect personally identifiable information from any person we actually know is a child under the age of 16.

The Foundation does not support DNT

At this time the Foundation sites do not recognize automated browser signals regarding tracking mechanisms, which may include ‘do not track’ instructions. However, you can change your privacy preferences regarding the use of cookies and similar technologies through your browser. You may set your browser to accept all cookies, block certain cookies, require your consent before a cookie is placed in your browser, or block all cookies. Please consult the ‘Help’ section of your browser for more information.

Special Notification for California Residents

Individual users of our website who reside in California and have provided their personal information to us may request information about our disclosures of certain categories of personal information to third parties for their direct marketing purposes. Such requests must be submitted to us through one of the addresses listed at the end of this Privacy Policy.

Within thirty days of receiving such a request, we will provide a list of the categories of personal information disclosed to third parties for third-party direct marketing purposes during the immediately preceding calendar year, along with the names and addresses of these third parties. This request may be made no more than once per calendar year. We reserve our right not to respond to requests submitted other than to the address specified in this paragraph.

Privacy Rights Under the EU General Data Protection Regulation (GDPR)

We are not marketing any of our services to individuals in the EU/EEA. The Foundation’s servers are located in the United States. Residents in the EEA who use our services have certain rights regarding your personal information, as described below, which may be subject to the European data privacy laws, such as the GDPR: you have the right to access your personal data and to ensure your personal information is accurate; you have the right to withdraw your consent at any time for personal information that is processed on your consent (the withdrawal shall not affect the lawfulness of processing based on your consent before its withdrawal); you may object to processing of your personal information, including for any direct marketing purposes; you have the right to request any correction of your personal data or that we delete your personal information; you have the right to request that we restrict the processing of your personal information (this may, however, compromise our ability to provide you with our goods and/or services); you also have the right to transfer your personal information to another service provider, where this information is processed on consent, and following your written request to us, we will provide you with your relevant personal information in a machine-readable format to transfer to another service provider.

To exercise these rights, please contact our Data Privacy Officer at:

If you wish to raise a complaint on how we have handled your personal information, you can contact our Data Privacy Officer who will investigate the matter and respond to you promptly. If you are not satisfied with our response, you can complain to any competent data privacy authority in your country of residence.

Changes to this policy

Our Privacy Policy is subject to change from time to time. Any changes to this Privacy Policy will be posted on this Web page, and we will mark the link to our updated Privacy Policy on the home page of this website to note the date of any changes so that you will always know what information we collect, how we use it and what choices you have.

Thank you for taking the time to review our Privacy Policy. If you have any questions about these policies, or your dealings with this website, you can contact:

Pompe Warrior Foundation

1195 Oakdale Ave

West St Paul, MN 55118

Email address:

Or you may fill out our “Contact Us” form online


Terms and Conditions of Use

By viewing and/or using this website, you are agreeing to all of the terms and conditions explained below.

  1. General. This website with its home page in the domain “” (the “Site”) is a complimentary information service offered by Pompe Warrior Foundation (“the Foundation”) at no charge to you as a user of the Site, with the express condition that you agree to be bound by the terms and conditions set forth in these Terms and Conditions of Use. The Foundation reserves the right to change these Terms and Conditions of Use any time, and you must consult the most recent version of these Terms and Conditions of Use each time you view the Site. Do not use the Site if you do not agree to all of the following terms and conditions.
  2. Intellectual Property/Hyperlinks. You agree to be bound by the terms and conditions set forth under the Service Marks, Copyright and Hyperlinks sections of these Terms and Conditions of Use.
  3. Representations and Warranties. You acknowledge that the information on the Site is provided “as is” for general information only. The Foundation makes no representations or warranties of any kind regarding this Site, including but not limited to any warranties of accuracy, completeness, currency, reliability, merchantability or fitness for a particular purpose, or any warranty that these pages, or the server that makes them available, are free of viruses or other harmful elements, and all such warranties are expressly disclaimed.
  4. Indemnification. You agree that you will hold harmless the Foundation and its officers, directors and employees from all claims arising out of or related to your access or use of, or your inability to access or use, this Site or the information contained in this Site or other websites to which it is linked, including but not limited to claims that you have found something you have heard, viewed or downloaded from this Site or another website to which it is linked to be obscene, offensive, defamatory, or infringing upon your intellectual property rights or the intellectual property rights of a third party. In no event will the Foundation or the contributors of information to this Site be liable to you or anyone else for any decision made or action taken by you in reliance on such information or for any consequential, special or similar damages, even if advised of the possibility of such damages.
  5. Opinions/Recommendations. You acknowledge that opinions and recommendations contained in this Site are not necessarily those of the Foundation or endorsed by the Foundation.
  6. Linked Sites/Third-Party Content. These Terms and Conditions of Use apply only to this Site. The Foundation may provide links on the Site to other websites which are not under the control of the Foundation. These links are provided for convenience of reference only and are not intended as an endorsement by the Foundation of the organization or individual operating the Site or a warranty of any type regarding the Site or the information on the Site. Under no circumstances will the Foundation be held liable, directly or indirectly, or any loss or damage that is caused or alleged to have been caused to you in connection with your use of, reliance on, or any content, goods or services available on any other website to which this Site links. You should direct any concerns to that website’s administrator.
  7. Governing Law and Jurisdiction. This Site (excluding linked sites) is controlled and operated by the Foundation, which is headquartered in the State of Minnesota, United States of America. It can be accessed from all 50 states, as well as United States territories and other countries around the world. By accessing this Site you agree that any action at law or equity arising or in any way relating to this Site, shall be filed only under the statutes and laws of the State of Minnesota, without regard to conflicts of law principles thereof. You also agree and hereby submit to the exclusive personal jurisdiction and venue of the State and Federal courts of the State of Minnesota. The Foundation makes no representation that materials on the Site are appropriate or available for use in other locations, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this Site from other locations do so of their own initiative and are responsible for compliance with local laws.
  1. As between you and the Pompe Warrior Foundation, all right, title and interest in and to the Site and any and all materials and information on/in the Site (collectively, the “Site Materials”), are the property of the Foundation. The Site and Site Materials are protected by law, including but not limited to U.S. and international copyright law, trademark law, trade secret law, as well as other state, federal, and international laws, regulations and treaties (collectively, “IP Laws“).
  2. You agree not to engage in any activity that would constitute copyright infringement with respect to the Site Materials. You may not reproduce, create derivative works of, distribute, publicly perform or publicly display the Site Materials or any portion thereof without the Foundation’s prior written consent. By way of illustration but not limitation, except as expressly permitted in these Terms and Conditions of Use or otherwise permitted by us in writing, you may not, directly or indirectly, transmit, download, upload, post, sell, rent, license, transfer, disclose, mirror, frame, reverse engineer, decompile, disassemble, or use any aspect of this Site or any Site Materials, in whole or in part, in any form or by any means.
  3. The contents of the Site, such as text, graphics, images, information, and other material contained on the Site (“Content”) are for informational purposes only and do not constitute medical advice. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the Site. The Foundation does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned on the Site. Reliance on any information provided by the Foundation, Foundation employees or volunteers, others appearing on the Site at the invitation of the Foundation, or other visitors to the Site is solely at your own risk.
  4. DISCLAIMER. throughout The Site you will see references to the ketogenic diet. Please be aware that there are many ways to implement a ketogenic diet — not all of which should be considered healthy. The Foundation’s goal is to share ONE FAMILY’s personal experience using a highly specialized and very closely monitored version of the ketogenic diet as part of the Overall treatment plan for The Family’s two-Year-old son. The Foundation HOPEs that the information provided on the Site is useful in discussing the potential for dietary changes with your own doctors and care team as a part of an overall treatment plan for individuals battling Pompe disease, or another glycogen storage disease or lysosomal storage disease.
  5. The Pompe Warrior Foundation is not a referral service and does not recommend or endorse any particular healthcare provider or practitioner. We do not offer advice regarding the quality or suitability of any particular Healthcare Provider for specific treatments or health conditions, and no information on this Site should be construed as health or medical advice. This information is not to be used as a recommendation to utilize the services of any specific healthcare provider or practitioner. You should obtain any additional information necessary to make an informed decision prior to utilizing any specific Healthcare Provider.
  6. You assume all responsibility in connection with choosing any healthcare provider or practitioner, whether or not you obtained information about such Healthcare Provider on or through this Site. The Foundation and its licensors, suppliers and affiliates (collectively, the “Affiliates“), and the directors, officers, agents, and representatives of each, assume no (and hereby disclaims all) responsibility or liability of any kind, for any advice, treatment or other services rendered by any healthcare provider or practitioner, or for any malpractice claims and other claims that may arise directly or indirectly from any such advice, treatment or other services.
  7. All uses of the Pompe Warrior Foundation’s federally registered and common law trademarks, service marks and trade names must be approved in writing by the Foundation. You further acknowledge that other names and logos contained in this Site or in the Site Materials are trademarks and service marks of third parties and may not be used without the permission of the trademark or service mark owner.
  8. The works of authorship contained in this Site, including but not limited to the Site Materials, are owned or licensed by the Foundation and may not be copied, reproduced, transmitted, displayed, performed, distributed, rented, sublicensed, altered, stored by subsequent use, or otherwise used in whole or in part in any manner without our prior written consent. Unless permitted otherwise in writing, you may only access the Materials located within the Site for your personal use. This means you may download copies of Materials for personal, noncommercial use only, so long as you neither change nor delete any author attribution, trademark, legend or copyright notice. When you download Materials, you do not obtain any ownership rights to the Materials.
  9. You may provide a hypertext link to the Pompe Warrior Foundation Site on another website, provided that:
  • the link must be an active, text-only link or approved banner or artwork provided by the Foundation (you may NOT use our logo without prior written approval) clearly marked “Pompe Warrior Foundation”;
  • the appearance, position and other aspects of the link may not be such as to disparage the Foundation or its services, damage or dilute the goodwill associated with the Pompe Warrior Foundation name and service marks, or to create the false appearance that an entity other than the Foundation is associated with, benefitting, or sponsored by the Foundation;
  • the link may not be associated with the sale of any products or services, or the promotion of any lottery, raffle, sweepstakes or other games of chance benefiting the Foundation;
  • the link will not appear on pages including content which the Foundation, in its sole discretion, finds to be objectionable, or which includes obscene, pornographic, violent, intolerant, tasteless, denigrating or sexually-oriented content or materials; and
  • the Foundation reserves the right to revoke its consent to the link at any time in its sole discretion by amending these Terms and Conditions of Use. You acknowledge and agree that you are responsible for keeping up with any such changes.
  • All other hypertext links to this Site must be approved in writing by the Foundation. To inquire, please send us a message found under Contact Us on the Site.
  • Use of a hypertext link does not indicate or create any endorsement, approval, sponsorship or affiliation of or with your website by the Foundation. This permission to link is provided without warranties of any kind, express or implied, including without limitation, warranties of title of non-infringement.

Thank you for taking the time to review our Terms and Conditions of Use. If you have any questions about these policies, or your dealings with this Site, you can contact:

Pompe Warrior Foundation

1195 Oakdale Ave

West St Paul, MN 55118

Email address:

Or you may fill out our Contact Form.

Pompe Warrior Foundation is a registered as a 501(c)(3) nonprofit organization. All contributions are tax deductible to the extent allowable by law. EIN: 82 – 1706644.

All Rights Reserved.