Donor Privacy Policy for the

Kabuki Syndrome Foundation

Last modified on Septmber 14, 2022

The Kabuki Syndrome Foundation (KSF) is committed to safeguarding your privacy and personal data. KSF will not sell, trade or share a donor’s personal information with anyone else, nor send donor mailings on behalf of other organizations.

The Donor Bill of Rights was created by the Association of Fundraising Professionals (AFP), the Association for Healthcare Philanthropy (AHP), the Council for Advancement and Support of Education (CASE), and the Giving Institute: Leading Consultants to Nonprofits. It has been endorsed by numerous organizations.

 

The Donor Bill of Rights

Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To assure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in KSF organizations and causes they are asked to support, KSF declares that all donors have these rights:

  1. To be informed of the organization’s mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes.

  2. To be informed of the identity of those serving on the organization’s governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities.

  3. To have access to the organization’s most recent financial statements.

  4. To be assured their gifts will be used for the purposes for which they were given.

  5. To receive appropriate acknowledgement and recognition.

  6. To be assured that information about their donation is handled with respect and with confidentiality to the extent provided by law.

  7. To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.

  8. To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors.

  9. To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.

  10. To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.

 

The Kabuki Syndrome Foundation (KSF) is committed to protecting the privacy of our donors and the personal information you may share with KSF or that KSF holds. KSF values our donors’ trust and recognizes that maintaining this trust requires us to be transparent and accountable to our supporters and the public at all times. This Donor Privacy Policy (the “Policy”) describes the information collected about our donors and KSF’s practices for using, maintaining, protecting, and disclosing that information.

Information Collected and Maintained

 

KSF collects and maintains personal information that you, our donors, provide to us when you:

  1. Contact us by phone, mail, or email, in person, or via our website or social media sites.

  2. Register for and/or attend an event sponsored by KSF.

  3. Make a donation, either through our website, at a special event, by mailing in a check, or through our social media sites.

 

Types of Information

  1. KSF collects and maintains the following types of personal information about our donors:

    • Contact information, such as name, address, email, and telephone number.

    • Giving information, including types and amounts of donations, connection to Kabuki syndrome, and information pertaining to the honoring or memorial of a specific individual.

    • Information on events attended and publications received.

    • Any other information provided by the donor to KSF, such as public comments or posts on KSF’s website, information provided in a notes section when making a donation, or age information if provided for an event that necessitates such information.

  2. When you make a donation from KSF’s Website, the payment information is submitted directly by the donor to a third party Website for processing of payment. KSF does not collect, store, or see any credit card information.
     

Confidentiality 

 

All information about any financial and non-financial transactions between you and KSF is considered highly confidential. While the information is kept confidential, it may be shared with KSF’s board members, staff, volunteers, independent contractors or professionals on a need-to-know basis and in compliance with all laws, regulations, court orders, or other governmental requests.
 

Use of Personal Information 

 

KSF collects and maintains personal information to:

  1. Establish a relationship and communicate with you about KSF, including our programs, special events, research endeavors, and funding needs.

  2. Publicly recognize and thank you in our annual report, if you so consent to KSF doing so.

  3. Learn about our donors and what matters to you.

  4. Process donations and event registrations, and issue tax receipts and donor acknowledgment letters.

  5. Comply with all laws and regulations, including reporting requirements.

  6. Plan future fundraising activities and events.

  7. Analyze giving patterns.
     

KSF will not share, sell, or exchange your personal information with any other entity for third-party fundraising or marketing purposes.  When a donation is made in memory or honor of a specific individual, KSF may share the donor’s name, address, email address and/or donation amount to the associated family of the individual being memorialized/honored for the purpose of the associated family being able to personally thank and/or convey their appreciation to the donor.

 

Communications 

 

By providing KSF with your personal information, you agree to receive communications from KSF. KSF will from time to time communicate with you, including by telephone, text, email, and mail, concerning KSF’s charitable activities, events, and requests for future support. To opt out of receiving these communications, you may contact KSF as described in the “Contact Us” section of this Policy below or by clicking on the “unsubscribe” link if such option is provided in a given email communication.
 

Accessing and Correcting Your Personal Information

 

You can review and request changes to the personal information that KSF has collected about you by contacting KSF as described in the “Contact Us” section of this Policy below. However, please be aware that KSF may not accommodate a change request that would impact record retention or other operational requirements, violate any law or legal requirement, or cause the information to be incorrect.
 

Changes to the Policy 

 

KSF may periodically update this Policy. When we do, we will also revise the “last modified” date at the top of this Donor Privacy page. We encourage you to periodically review this privacy statement to stay informed about how we are helping to protect the personal information we collect. Your continued use of the service constitutes your agreement to this privacy statement and any updates.
 

Children Under the Age of 16 

 

KSF’s website is not intended for children under 16 years of age. No one under age 16 may provide any information to or on the website. KSF does not knowingly collect personal information from children under 16. If you are under 16, do not use or provide any information on this website or through any of its features, register on the website, make any purchases through the website, use any of the interactive or public comment features of this website, or provide any information about yourself to KSF, including your name, address, telephone number, or email address. If KSF learns it has collected or received personal information from a child under 16 without verification of parental consent, KSF will delete that information. If you believe KSF might have any information from or about a child under 16, please contact KSF as described in the “Contact Us” section of this Policy below.
 

Contact Us 

 

To opt out of receiving communications from KSF, to review the personal information that KSF has collected about you, or to ask any other questions regarding this Policy, please contact KSF at our postal address or email address below:

The Kabuki Syndrome Foundation

PO Box 214

Northbrook, IL 60065

info@kabukisyndromefoundation.org

Privacy Policy for the Kabuki Syndrome Foundation

Last modified on Septmber 14, 2022

The Kabuki Syndrome Foundation (KSF) respects your privacy and is committed to protecting it through our compliance with this Privacy Policy (the “Policy”). This Policy describes the types of information we may collect from you or that you may provide when you or your computer interact with our website www.kabukisyndromefoundation.org (our "Website") or register for our events and our practices for collecting, using, maintaining, protecting, and disclosing that information. This Policy does not apply to information collected by us offline or through other means. It also does not apply to information collected by any third party, including through any application or content that may link to or be accessible from or on the Website. 

By accessing or using our Website, you acknowledge and fully understand this Policy and freely consent to the information collection and use practices described in this Policy. This Policy may change from time to time (see the “Changes to Our Privacy Policy” section below). Your continued use of our Website after we make changes is deemed to be acceptance of those changes, so please check the Policy periodically for updates. 

 

Children Under the Age of 16 

Our Website is not intended for children under 16 years of age. No one under age 16 may provide any information to or on the Website. We do not knowingly collect personal information from children under 16. If you are under 16, do not use or provide any information on our Website or through any of its features, register on our Website for any events or any other purpose, make any donations through our Website, or provide any information about yourself to us, including but not limited to, your name, address, telephone number, or email address. If we learn that we have collected or received personal information from a child under 16 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 16, please contact us at info@kabukisyndromefoundation.org

Information We Collect About Donors

See the Policy entitled “Donor Privacy Policy for The Kabuki Syndrome Foundation,” which describes the information collected about our donors and KSF’s practices for using, maintaining, protecting, and disclosing that information. 

Information We Collect About You and How We Collect It

When you use or connect to our Website through a computer or a mobile device, we may collect several types of information from and about users of our Website, including information: 

  1. By which you may be personally identified, such as name, postal address, e-mail address, telephone number, etc ("Personal Information");

  2. That describes your connection to Kabuki syndrome, demographic information, birth year, and genetic mutation information (if applicable) as part of our directory;

  3. About your volunteer participation and information requests;

  4. That is about you but individually does not identify you, such as number of visits on our Website or your country of origin; 

  5. About your internet connection, the equipment you use to access our Website, and usage details; and/or 

  6. Amount of a donation or an amount raised during a fundraiser. 

We may collect this information in various ways: 

  1. Directly from you when you provide it to us; and/or 

  2. Automatically as you navigate through our Website or through the use of website analytics through a third party service provider. Such information collected automatically may include usage details, Internet Protocol (IP) addresses, and information collected through cookies, web beacons, and other tracking technologies. 

Information You Provide to Us

The information we collect on or through our Website may include: 

  1. Information that you provide when making a donation (including Personal Information and if the donation is in honor or in memory of someone) or filling in and submitting forms on our Website. This may include information provided at the time of subscribing to our mailing list, registering for an event by or on behalf of KSF, sending a message through our Website, or requesting further information or services from KSF. We may also ask you for information when you participate in a fundraising event, correspond with a volunteer from KSF, including a board member or regional ambassador, or when you report a problem with our Website. When you make a donation using our Website, payment information is submitted directly by the donor to a third party website for processing of payment. KSF does not collect, store, or see any credit card information. 

  2. Records and copies of your correspondence (including email addresses), if you contact us. 

  3. Your responses to surveys that we might ask you to complete for research purposes, to capture information on and about our community, or to obtain feedback. 

Information We Collect Through Automatic Data Collection Technologies 

As you navigate through and interact with our Website, we may use automatic data collection technology called Google Analytics (operated by Google Inc., 1600 Amphitheatre Parkway, Mountain View, CA 94043) to collect certain information about your equipment, browsing actions, and patterns, including: 

  1. Details of your visits to our Website, including traffic data, location data, logs, and other communication data and the resources that you access and use on our Website. 

  2. Information about your computer and internet connection, including your IP address, operating system, and browser type. 

We also may use these technologies to collect information about your online activities over time.

The information we collect automatically may include Personal Information, and we may maintain it or associate it with Personal Information we collect in other ways or receive from third parties. It helps us to improve our Website and to deliver a better and more personalized service, including by enabling us to: 

  1. Estimate our audience size and usage patterns. 

  2. Store information about your preferences, allowing us to customize our Website according to your individual interests. 

  3. Speed up your searches. 

  4. Recognize you when you return to our Website. 

The technologies we use for this automatic data collection may include: 

  1. Cookies (or browser cookies). A cookie is a small file placed on the hard drive of your computer to improve functionality and performance. The cookie will generate information and will typically transmit this information to a Google server where it is stored. Google may potentially transfer the collected information to third parties. You may refuse to accept browser cookies by activating the appropriate setting on your browser. However, if you select this setting you may be unable to access certain parts of our Website. Unless you have adjusted your browser setting so that it will refuse cookies, our system will issue cookies when you direct your browser to our Website. 

  2. Flash Cookies. Certain features of our Website may use local stored objects (or Flash cookies) to collect and store information about your preferences and navigation to, from, and on our Website. Flash cookies are not managed by the same browser settings as are used for browser cookies. For information about managing your privacy and security settings for Flash cookies, see the “Choices About How We Use and Disclose Your Information” section below. 

  3. Web Beacons. Pages of our Website and/or emails sent from our platform may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags, and single-pixel gifs) that permit KSF, for example, to count users who have visited those pages, opened an email and for other related website statistics (for example, recording the popularity of certain website content and verifying system and server integrity). 

We may tie this information to Personal Information about you that we collect from other sources or you provide to us. For more information about Google Analytics, see Google’s privacy statement at https://policies.google.com/privacy?hl=en 

How We Use Your Information

We may use information that we collect about you or that you provide to us, including any Personal Information: 

  1. To present our Website and its contents to you.

  2. To provide you with information or services that you request from us. 

  3. To notify you about changes to our Website or services we offer or provide through it. 

  4. To maintain a directory of families having a person(s) affected by Kabuki syndrome. 

  5. To notify you of fundraiser or donation opportunities. 

  6. To maintain a record/history of donation(s) provided to KSF. 

  7. To acknowledge donors and provide tax receipts. 

  8. To notify you of events such as our annual research conference, activities, and services sponsored by KSF. 

  9. To provide information on research grant opportunities. 

  10. To provide information on clinical trial opportunities.

  11. To provide updates on research related to Kabuki syndrome and/or funded by KSF.

  12. To share general updates, opportunities, and information pertinent to KSF.

  13. In any other way we may describe when you provide the information.

  14. For any other purpose with your consent. 

Disclosure of Your Information

We may disclose aggregated information about our users without restriction. 

We may disclose Personal Information that we collect or you provide as described in this privacy Policy: 

  1. To fulfill your service requests or the purpose for which you provide it. 

  2. To contractors, service providers, and other third parties we use to support our business. 

  3. For any other purpose disclosed by us when you provide the information. 

  4. With your consent. 

  5. To comply with any court order, law, regulation, law enforcement or government regulatory authorities, or legal process, including to respond to any government or regulatory request. 

  6. Required to be disclosed for us to defend against liability or protect our legal rights.

We do not sell identifiable personal information to third party marketing companies. 

Choices About How We Use and Disclose Your Information

We strive to provide you with choices regarding the Personal Information you provide to us. We have created mechanisms to provide you with the following control over your information: 

Opting Out. If you wish, you may choose not to receive emails, newsletters, or other communications from KSF by clicking the “Unsubscribe” link in an email communication sent to your email account. You may also change your preferences or expressed interests by clicking links pertaining to profile updates at the end of an email. You can opt-out by sending us an email stating your request to info@kabukisyndromefoundation.org

Tracking Technologies and Advertising. You can set your browser to refuse all or some browser cookies, or to alert you when cookies are being sent. You can also delete a cookie that has already been set by Google Analytics at any time with the browser or other software programs. To learn how you can manage your Flash cookie settings, visit the Flash player settings page on Adobe's website. Further, you may prevent data collection (including information related to your use of our Website) via the cookie by downloading and installing a browser plug-in available from Google under the following link: https://tools.google.com/dlpage/gaoptout?hl=en. With this browser plug-in, JavaScript communicates with Google Analytics that data and information about visits to our Website may not be transmitted to Google Analytics. Further, if you disable or refuse cookies, please note that some parts of our Website may then be inaccessible or not function properly. 

Promotional Offers from KSF. If you do not wish to have your Personal Information used by KSF to promote KSF’s or third parties' products, services, or research, you can opt-out by sending us an email stating your request to info@kabukisyndromefoundation.org

Information Over the Internet

The Internet is a worldwide setting, and using the Internet to collect and process Personal Information inevitably involves transmitting the data on an international basis. By using our Website and/or electronically communicating with us, you consent to processing of Personal Information in this manner.

Accessing and Correcting Your Information

You may send us an email at info@kabukisyndromefoundation.org to request access to, correct, update or delete any Personal Information that you have provided to us. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect.

 

For Users Residing In or Citizens of the European Union Only

Under the General Data Protection Regulation (GDPR), you have the right to request from KSF information about your personal data processed, erasure of your personal data, and restriction of the processing of your personal data. To make such a request, send an email to 

info@kabukisyndromefoundation.org, and include “GDPR Personal Data Request,” along with the following: your first and last name, physical address, contact email, the information you are seeking (time frame, subject matter, and any other relevant details), the action you are requesting that KSF take, and in what capacity you have interacted with KSF online. 

Changes to Our Privacy Policy

KSF may periodically update this privacy Policy. When we do, we will also revise the “last modified” date at the top of this webpage. We encourage you to periodically review this privacy statement to stay informed. Your continued use of our Website and/or services constitutes your agreement to this privacy statement and any updates. 

Contact Information

To ask questions or comment about this privacy Policy and our privacy practices, to opt out of receiving communications from KSF, to review the personal information that KSF has collected about you, please contact KSF at our postal address or email address below:

The Kabuki Syndrome Foundation

PO Box 214

Northbrook, IL 60065

info@kabukisyndromefoundation.org