Welcome. This Policy is designed to help you understand generally how www.curegm1foundation.org and www.curegm1.org and other Foundation Web properties (the “Site”) collect personally identifying information about you and how the Foundation uses and discloses that personal information. Personal informational may be obtained through phone calls, in person or correspondence as well. This document applies to all personal information. www.curegm1.org is an alias for www.curegm1foundation.org. These are links to the web site of the Cure GM1 Foundation (the “Foundation,” “we,” “us” etc.), a charitable public 501(c)(3) nonprofit foundation existing under the laws of the State of California, U.S.A. You may contact us at our Address for questions below. This Policy applies to information that personally identifies you (other than publicly available information) (“personal information”) collected on www.curegm1foundation.org or any additional Foundation Web properties or third-party sites managed by the Cure GM1 Foundation or, where indicated, other information you provide to us.

USE OF OUR SITE OR PROVISION OF ANY PERSONAL INFORMATION CONSTITUTES AGREEMENT TO THIS POLICY. DO NOT USE THE SITE OR PROVIDE INFORMATION (OR ALLOW OTHERS TO DO SO ON YOUR BEHALF) IF YOU (AND YOUR PRINCIPAL IF YOU ARE ACTING AS AGENT) DO NOT AGREE WITH ALL OF THE TERMS OF USE INCLUDING THIS POLICY AND ANY APPLICABLE SUPPLEMENTAL PRIVACY POLICY.

  1. Information We Collect That You Do Provide

It is always your choice, or the choice of anyone acting for you, whether to provide personal information. However, some must be provided to participate in certain programs or activities (such as submitting information to our GM1 Registry or donating funds), so the decision not to provide information might limit or eliminate certain functions of the Site or the ability to participate. Other information is up to your good judgment, e.g., do not provide personal information about yourself that could be misused by others in a chat room, bulletin board, blog or similar forum and do not provide personal information about others without their permission. The kinds of personal information we tend to request about you or others include but are not limited to your name, email address, native language, organization name, diagnosis, city, state / province, region, age, and history pertaining to GM1 Gangliosidosis.

 

  1. Information You Provide About Others

Do not supply personal information about others unless you are authorized or required to do so by applicable law or contract and you consent to this Policy and supplemental policies on behalf of yourself and the “data subject” (the person about whom you supply personal information). Before supplying personal information about others (except as otherwise allowed by law or contract), you must make available for the data subject’s review, and obtain their written consent to this policy. By submitting any personal information about others, you represent and warrant that you are authorized to do so and that you did all of the foregoing before submitting the information. If applicable law allows you to supply the information without doing the foregoing, you represent and warrant that you have abided by that law and that it allows us to receive and Disclose the information under this Policy without any further action on our part. You agree to indemnify, defend and hold us harmless against any failure by you to comply with this paragraph.

The Foundation works with Third Parties on certain programs, e.g., fundraising web sites, and often those Third Parties own and/or are responsible for that program’s web site. In those cases, if you provide personal information, you will be giving it to a third party and their privacy policy will apply. You agree that if they provide it to us then we may apply our Policy to what we receive.

 

  1. What We Generally Do with Personal Information Collected

In general, we use personal information we collect to pursue our mission and operations and to engage in the activity (and related activities) for which we collect it.  Specifically, we may use your personal information to:

  • to fulfill our obligations to you and to respond to any questions or requests;
  • to contact you about material changes in our site terms or policies;
  • to comply with the law or in good faith belief that such action is necessary to conform with the requirements of law or to comply with legal process served on us;
  • to provide to third parties as a result of any reorganization process;
  • if you sign up for a blog, feed or newsletter, we may put you on our mailing list or even the list of a Third Party who we think has a similar mission.

 

You should assume that we will use all information for all lawful purposes. Subject to applicable law, we reserve the right to make all lawful, worldwide uses of personal information, including without limitation, to: collect, use, access (or bar access), process, fulfill, disclose, display, share, respond to legal process or otherwise exercise our rights under applicable law, transfer, store, verify,  enforce, delete, and otherwise deal with personal information, and information other than personal information (collectively “Disclose”).

 

  1. Your Ability to Update Personal Information

To the extent our systems require your personal information, in general, they provide the ability for you to update your information.  If you have any questions about what personal information about you the Foundation retains, please contact us at curegm1@gmail.com. The foundation endeavors to keep your personal information accurate and up to date.   If your personal information has changed, you may submit your new information there as well.

We keep personal information for as long as we think is necessary or advisable and we reserve the right to retain it to the full extent not prohibited by law. We may discard personal information in our discretion, so you should retain your own records, and not rely upon our storage of any personal information or other data.

 

  1. Children
We do not want to collect information from children. Do not provide any personal information unless you are at least 13 years of age, and please caution your children not to provide any. If a child under 13 has provided personal information, a parent or guardian may so inform us by writing us at Our Address (see below) and we will use commercially reasonable efforts to delete it from our database, subject to applicable law and this Policy.

 

  1. Amendments
We will be changing what we do and how and why we Disclose data periodically—this Policy describes what we currently envision, but that will change as we change. You agree that this Policy amends and replaces any previous privacy polic(ies). We may further amend all or part of this Policy in the same way that we make amendments to our Terms of Use and such amended versions will be posted on this page.

 

  1. Information About Enforcement of Our Policy

This Policy forms a contract. If you think we are in default, you may contact us by writing to Our Address. There are no third party beneficiaries of this Policy.

Our Address:

Cure GM1 Foundation

P.O. Box 6890

Albany, CA 94706