Donor and Privacy Policies
The Kabuki Syndrome Foundation is committed to safeguarding your privacy and personal data.
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.
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.
Information Collected and Maintained
KSF collects and maintains personal information that you, our donors, provide to us when you:
Contact us by phone, mail, or email, in person, or via our website or social media sites.
Register for and/or attend an event sponsored by KSF.
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
KSF collects and maintains the following types of personal information about our donors:
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:
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.
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.
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
Last modified on Septmber 14, 2022
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 firstname.lastname@example.org.
Information We Collect About Donors
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:
We may collect this information in various ways:
Information You Provide to Us
The information we collect on or through our Website may include:
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.
Records and copies of your correspondence (including email addresses), if you contact us.
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:
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:
The technologies we use for this automatic data collection may include:
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.
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:
Disclosure of Your Information
We may disclose aggregated information about our users without restriction.
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 email@example.com
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 firstname.lastname@example.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 email@example.com 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
firstname.lastname@example.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.
The Kabuki Syndrome Foundation
PO Box 214
Northbrook, IL 60065