Last updated: 19 March 2021

Who We Are

We are CSNK2A1 Foundation, 1929 Van Ness Avenue, San Francisco, CA 94109, (415) 483-2488.
Our website address is:
CSNK2A1 Foundation is a 501(c)(3) non-profit organization.  EIN #82-4220939.


The information provided on our website is not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read on this website. Never rely on information on this website in place of seeking professional medical advice. No images on this site may be used or reproduced without the written consent of CSNK2A1 Foundation.

Using the website

By accessing or using the website, including browsing the site, you expressly consent to the collection, use, storage, processing, and disclosure of your information in accordance with this Privacy Policy.

Policy for logo use

The trademarks, logos, and service marks (“Marks”) displayed on this website, and related websites belonging to CSNK2A1 Foundation, including the CSNK2A1 Foundation logo, among others, are trademarks of CSNK2A1 Foundation are the property of CSNK2A1 Foundation, and are protected. Their uses are restricted to those programs and events sponsored by CSNK2A1 Foundation, and CSNK2A1 Foundation trademarks may not be used for personal financial gain. Use of the Marks is prohibited without the express written consent of CSNK2A1 Foundation. Nothing contained on this site should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Marks without the express written consent of CSNK2A1 Foundation.

At times, CSNK2A1 Foundation may grant limited-use licensing agreements to those individuals or groups who wish to help further the mission of CSNK2A1 Foundation. Solely at the discretion of CSNK2A1 Foundation, limited permission for use of CSNK2A1 Foundation’s Marks may be granted for those projects which provide a substantial benefit to CSNK2A1 Foundation or the Okur-Chung Neurodevelopmental Syndrome (“OCNDS”) community in general. For consideration, please submit, in writing, a letter of intent, which details how the CSNK2A1 Foundation’s Marks will be used, the length of time they will be used, and the benefit of the project to CSNK2A1 Foundation or OCNDS community to at least 30 days prior to launch. Letters of intent may also be sent to: CSNK2A1 Foundation, 1929 Van Ness Avenue, San Francisco, CA 94109.

Use of CSNK2A1 Foundation Name & Logo in Family Fundraisers

CSNK2A1 Foundation supports families wishing to promote awareness and understanding of OCNDS within their local communities. CSNK2A1 Foundation will provide educational materials and, in certain instances, store items for fundraisers where 100% of the proceeds benefit the organization. These items along with the CSNK2A1 Foundation logo will not be available for fundraisers with less than 100% benefiting CSNK2A1 Foundation.

To request assistance from CSNK2A1 Foundation for a fundraiser, the event coordinator should submit a request to the President of CSNK2A1 Foundation and provide a description of the event.

The right to use the name “CSNK2A1 Foundation” will not be granted in any contracts unless approved and signed by the CSNK2A1 Foundation Board of Directors.
Families wishing to use the CSNK2A1 Foundation name and/or logo in their event should contact CSNK2A1 Foundation at at least 30 days prior to their event with a proposal for intended uses of the name and/or logo.


Parts of the Terms of Use affect this Privacy Policy, so please be sure to review the Terms of Use prior to using the website.

What personal data we collect and why we collect it

Like many site operators, we collect information that your browser sends whenever you visit our site.  This data may include information such as your computer’s Internet Protocol (“IP”) address, browser type, browser version, the pages of our site that you visit, the time and date of your visit, the time spent on those pages and other statistics. In addition, we may use third party services such as Google Analytics  that collect, monitor and analyze this.  You may review their privacy police here:

We collect personal data, such as name, email address, personal account preferences; transactional data, such as purchase information; and technical data.

Contact Registry

Our Contact Registry database is not shared with external organizations. We will not use the Contact Registry for marketing or fundraising. We may use aggregate data from the Contact Registry to publish statistics about the incidence of OCNDS. Contact Registrants will be informed about opportunities to participate in research. You will also receive family meeting announcements, special mailings, and information regarding any discoveries about OCNDS impacting care decisions.

If you participate in our Contact Registry you agree to allow CSNK2A1 Foundation to store information about yourself and/or your dependent with OCNDS. Your data may be used in aggregate to compile and publish statistics about the incidence of OCNDS.

Donation Form

We keep Donation form submissions for 2 years for customer service purposes, and we do not use the information submitted through them for marketing purposes.


When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.

An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: After approval of your comment, your profile picture is visible to the public in the context of your comment.


No images on this site may be used or reproduced without the written consent of CSNK2A1 Foundation.

If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.

Contact forms

We keep contact form submissions for 2 years for customer service purposes, but we do not use the information submitted through them for marketing purposes.


If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.

If you have an account and you log in to this site, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.

When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.

If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.

Embedded content from other websites

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.


We use Google Analytics, a web analytics service offered by Google that tracks and reports website traffic. You may review their privacy police here:

What we collect and store when you shop on our website

We collect information about you during the checkout process on our store.

While you visit our site, we’ll track:

  • Products you’ve viewed: we’ll use this to, for example, show you products you’ve recently viewed
  • Location, IP address and browser type: we’ll use this for purposes like estimating taxes and shipping
  • Shipping address: we’ll ask you to enter this so we can, for instance, estimate shipping before you place an order, and send you the order!

We’ll also use cookies to keep track of cart contents while you’re browsing our site.

When you purchase from us, we’ll ask you to provide information including your name, billing address, shipping address, email address, phone number, credit card/payment details and optional account information like username and password. We’ll use this information for purposes, such as, to:

  • Send you information about your account and order
  • Respond to your requests, including refunds and complaints
  • Process payments and prevent fraud
  • Set up your account for our store
  • Comply with any legal obligations we have, such as calculating taxes
  • Improve our store offerings
  • Send you marketing messages, if you choose to receive them

If you create an account, we will store your name, address, email and phone number, which will be used to populate the checkout for future orders.

We generally store information about you for as long as we need the information for the purposes for which we collect and use it, and we are not legally required to continue to keep it. For example, we will store order information up to 2 years for tax and accounting purposes. This includes your name, email address and billing and shipping addresses.

We will also store comments or reviews, if you choose to leave them.

Who on our team has access

Members of our team have access to the information you provide us. For example, both Administrators and Shop Managers can access:

  • Order information like what was purchased, when it was purchased and where it should be sent, and
  • Customer information like your name, email address, and billing and shipping information.

Our team members have access to this information to help fulfill orders, process refunds and support you.


We accept payments through PayPal. When processing payments, some of your data will be passed to PayPal, including information required to process or support the payment, such as the purchase total and billing information.

Please see the PayPal Privacy Policy for more details.

Who we share your data with

We do not share the personal data you provide us in contact forms or the Contact Registry with anyone. If you purchase products in our shop, we share information with third parties who help us provide our orders and store services to you; for example, our payment gateway, product fulfillment company, and shipping providers.

How long we retain your data

If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.

For users who register on our website, we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.

What rights you have over your data

If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.

Where we send your data

We collect information about visitors who comment on our site through the Akismet anti-spam service. The information includes the commenter’s IP address, user agent, referrer, and Site URL (along with other information directly provided by the commenter such as their name, username, email address, and the comment itself). You can review Akismet privacy policy here:

How we protect your data

Our website uses the most comprehensive security solution available. It incorporates a 24/7 firewall and malware scanner to protect your data. The security of your personal information is important to us, but remember that no method of transmission over the Internet, or method of electronic storage, is 100% secure. We cannot guarantee its absolute security. We are not responsible for the republishing of the content found on this site on other websites or media without our permission.

Changes to this Privacy Policy

This privacy policy is effective as of 17 April 2018 and will remain in effect except with respect to any changes in its provisions in the future, which will be in effect immediately after being posted on this page.

We reserve the right to update or change our Privacy Policy at any time and you should check this Privacy Policy periodically. Your continued use of our website after we post any modifications to the Privacy Policy on this page will constitute your acknowledgment of the modifications and your consent to abide and be bound by the modified Privacy Policy.

If we make any material changes to this Privacy Policy, we will notify you either through the email address you have provided us, or by placing a prominent notice on our website.

Contact us

If you have any questions about this Privacy Policy, please contact us at


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