Acceptance Through Use. This Website is owned and operated by CASK Gene Foundation Inc, doing business as The CASK Gene Foundation. We are a registered non-profit in the state of Utah, and are recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit: EIN 84-3820188. Click Here for IRS verification.

In this policy, The CASK Gene Foundation may be referred to as any of the following terms: “CGF,” “we,” “us,” “our,” “the Foundation.” We use the terms “you,” “your,” and “users,” to refer to any individual using this website in any way. 

These Conditions of Use (with the associated Privacy Policy) govern your use of the website www.caskgene.org (“Website” or “Site”). Use of our Website includes accessing, browsing, registering to use, or submitting information through our Website. Please read both policies carefully before you start using our Website in any way.

By using the Site, you agree to be bound by all of the terms, conditions and notices contained or referenced in these Conditions of Use. You should review these policies from time to time. We may change any portion of the Conditions of Use at any time without notice by posting revisions to the Site. You should monitor the Conditions of Use for any changes, as notice is not required to be provided to you. Your continued use of the Site constitutes your acceptance of the revised Conditions of Use and Privacy Policy. If you do not agree to any of the content of the Conditions of Use or the Privacy Policy, you must exit the Site immediately.

Website Purposes. The main objective of Our Website is to raise awareness amongst the general public, parents, medical professionals, treatment providers and decision-makers about the CASK Gene, and the impact that CASK Gene Disorders have on the lives of patients and their families. Our website also provides features and functions to support a broad scope of purposes and objectives for which Our Foundation was created.  (See: Our Mission)

The Website provides: 

1. Information about the CASK Gene, including but not limited to a) information about related disorders; b) information and expectations for patients living with CASK gene disorders; c) our official CASK Gene Awareness Day © (July 15) and all of the related events happening around the world currently and historically. 

2. On-demand resources for a) parents of those diagnosed with a CASK Gene Disorder, with support from all around the world for the cause; b) researchers interested in working with the CASK Gene; c) medical providers diagnosing or treating those with CASK Gene Disorders; and d) advocates wishing to raise awareness and improve education relating to the CASK Gene.

3. Access to communicate with the Foundation for purposes including but not limited to: a) joining a contact registry; b) registering a new CASK Gene Disorder case; c) making a donation or operating a fundraiser; d) submitting a research study for consideration for recruitment or grat funding purposes e) participating in CASK Gene Foundation operated research studies; f) connecting with external CASK Gene Researchers for participation in their studies; and g) volunteering for the Foundation.

4. Information about The CASK Gene Foundation, including but not limited to a) verification of our current status as a 501(c)(3); b) financial reports and fiscal accountability; c) details about our vision, purposes, and objectives; and d) biographies for our Governing Board, and other volunteer team members

The information is available to any internet users, who choose to access the Website and is in the form of, including but not limited to, text, pictures, posters, video and audio files (together “Materials”).

No Use by Children. The Site is not directed to, or intended for use by, children (defined as anyone less than 13 years of age). Children should not use the Site or submit any information to the Foundation. By using this Site, you represent and warrant you are at least 13 years of age and you hereby ratify any prior grant of rights, consents, agreements, assignments or waivers made by you. If you choose to register an account, your account may be used only by you.

Accessibility. The Website and the Materials may be adjusted, modified or completed at any time and without prior announcement or notice. We give no guarantees regarding the function or availability of the Website and the Materials and cannot be held responsible for any malfunctions or temporary (un)availability or for any direct or indirect damage that may arise from your access to or your use of the Website and the Materials.

While, You are responsible for making all arrangements necessary for you to have access to Our Website, please note that Our Website has been designed to adhere closely to accessibility recommendations and guidelines, in particular to allow Users with motor or visual disabilities full access to the content and Materials made available by The CASK Gene Foundation. If you encounter any difficulties using Our Website, e-mail Us at info@caskgene.org ATTN: Webmaster.

Limitation of Liability. To the extent permitted by local and federal law, we exclude all conditions, warranties, representations or other terms which may apply to Our Website or any content on it as well as to the Materials, whether express or implied.

We will not be liable to any user for any loss or damage, whether in contract, tort (including negligence), breach of statutory duty, or otherwise, even if foreseeable, arising under or in connection with the use of, or inability to use, Our Website; or the use of or reliance on any content displayed on Our Website. As User, please note that We only provide Our Website for educational and private use. You agree not to use Our Website for any commercial or business purposes, and We have no liability to you for any loss of profit, loss of business, business interruption, or loss of business opportunity.

We will not be liable for any loss or damage caused by a virus, distributed denial-of-service attack, or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of Our Website or to your downloading of any Materials on it, or on any website linked to it.

Viruses. We do guarantee that this Website and the Materials will be secure or free from bugs or viruses. Users are responsible for configuring their information technology, computer programs and platform in order to access Our Website. Users should use their own virus protection software.

Users must not misuse Our Website by knowingly introducing viruses, trojans, worms, logic bombs or other material which is malicious or technologically harmful. Users must not attempt to gain unauthorized access to Our Website, the server on which Our Website is stored or any server, computer or database connected to Our Website. Users must not attack Our Website via a denial-of-service attack or a distributed denial-of service attack. We will report any such breach to the relevant law enforcement authorities and We will cooperate with those authorities by disclosing the identity of the users to them. In the event of such a breach, your right to use Our Website will cease immediately.

Links to Third Party Sites. The Site may contain links to websites operated by third parties. These links do not constitute or imply an endorsement of any linked site. The linked sites may appear to be integrated into the Site, but are not under the Foundation’s control. We are not responsible for the operation or content of any linked site or subsequent links from that site. The policies that govern the use of a linked site will differ from these Conditions of Use. You should review the policies of a linked site before making a decision to use that site.

Prohibited Uses. If the Website contains online forums, or other message or communication facilities, We are not responsible for the content or quality of contributions by Users. Opinions expressed by Users do not necessarily reflect the opinions of The CASK Gene Foundation. We maintain that online forums and other message facilities are not replacements for individual counseling, or consultation with a health care professional.

If the Website contains online forums, or other message or communication facilities, Users shall not do any of the following:

1. Defame, abuse, harass, stalk, threaten or otherwise violate the legal rights of others;

2. Publish, post, distribute or disseminate any defamatory, infringing, obscene, indecent or unlawful material;

3. Upload or attach files that contain software of other material protected by intellectual property rights unless the User owns or controls the rights thereto or have received all necessary consents;

4. Upload or attach files that contain viruses, corrupted files, or any other similar software or programs that may damage the operation of another’s computer;

5. Upload, e-mail, transmit or otherwise make available unsolicited advertising of any goods or services, or conduct or forward surveys, contests, “spam” or chain letters; and

6. Promote any commercial product, medicinal product or health service for the purpose of, or resulting in, personal financial gain or act as a representative of a for-profit organization.

We have the right to remove any posting you make on our Website if, in our opinion, your content does not comply with any of the types of conduct listed above. Users specifically acknowledge and agree that We are not liable for any of these conducts of any other User.

User Submitted Content. Whenever you make use of a feature that allows you to upload content to Our Website, amongst others via features such as posting about a local event, or sharing a spotlight story about a CASK warrior, you shall also comply with the types of conduct listed above in the Prohibited Uses section, and you shall agree and acknowledge that:

Any content you upload to our Website will be considered non-confidential and non-proprietary.

Although you retain all of your ownership rights in your content, you grant Us a perpetual, worldwide, non-exclusive, royalty-free, transferable and sub-licensable license to use, reproduce, distribute, modify, prepare derivative works of, display, and perform all of that content. We may use your content for various purposes such as communication and fundraising purposes in connection to the CASK Gene Foundation.

When requested by a judicial authority or obliged by law, we will disclose your identity to any third party who is claiming that any content uploaded by you to Our Website constitutes a violation of their intellectual property rights or of their right to privacy.

Intellectual Property. We are the owner or the licensee of all intellectual property rights in the Website and in the Materials published on it. Those works are protected by national and international copyrights, trademarks, service marks, patents, patent registration rights, trade secrets, know-how or other proprietary rights and laws. All such rights are reserved.

Reproduction - We allow Users to freely download and electronically reproduce the Materials on Our Website provided that:

1. The User acknowledges Our Website as the source of the Materials, such an acknowledgement and suitable reference to the CASK Gene Foundation is made in the copy of the Materials (using the CGF URL caskgene.org, and #KickingCASK), and

2. The User informs third parties that they are subject to and must comply with the Conditions of Use of this Website. This permission is, however, revocable at any time by The CASK Gene Foundation.

Reproduction of materials in any hardcopy or other non-electronic form requires the receipt of written permission from the Foundation, through the Brand Ambassador licensure program, which may be accessed free of charge.

However, reproduction of the Materials, whether in paper or electronic media or other form, is only authorized for personal and non-commercial use and in support of activities related to the CASK Gene Foundation, including but not limited to, fundraising activities for your own CASK gene related events, individuals, and/or organization where 10% of the proceeds are remitted back to the CASK Gene Foundation (such remittance may be designated for a specific program area, at the preference of the user).

In no circumstance, the User may copy otherwise, republish, lend, post on servers, transmit or redistribute to (mailing) lists this information for commercial purposes without the prior written permission from The CASK Gene Foundation.

If you print off, copy or download any Materials in breach of the Conditions of Use, your right to use Our Website will cease immediately and you must, at Our option, return or destroy any copies of the Materials you have made.

Specific Copyrights

1. The CASK Gene Foundation logo, which is a registered trademark, may not be used for commercial purposes, but only in support of activities related to the purposes of the CASK Gene Foundation. As the CASK Gene Foundation logo is a symbol of a global partnership in the search for ways of improving the lives of those affected by CASK gene disorders, the logo can only be displayed in the same spirit in which it was intended. You may not alter the logo in any way such as by changing the design, colors or the proportions, or crop it or combine it within any other logo without prior written permission from the CASK Gene Foundation. In cases where it is not possible to use the correct colors due to technical limitations, you shall use the logo in black and white.

2. Events including “CASK Gene Awareness Day” © (July 15), and the “March for CASK” © fundraiser, which are the creations of the CASK Gene Foundation, and protected by copyright, are shareable using annually provided graphics to enable you to adapt them into your own designs as allowed by these Conditions of Use. You are allowed to translate the slogans and themes into your own language and to add your logo. These event materials must be paired with the CASK Gene Foundation Logo, URL (caskgene.org) and #KickingCASK.

3. Data and informational charts obtained from the global CASK Registry project are also shareable and free to use for purposes of research, awareness, and education relating to the CASK Gene, provided the CASK Gene Foundation has granted a data transfer and use agreement, and is cited as the source, either by use of the foundation name and URL (caskgene.org), or using an appropriate style guide for source citation in published works. The CASK Gene Foundation reserves the right to link to such uses of this data and these charts, in connection with the global CASK Registry project, regardless of transfer and use agreement status. 

Any non-compliant use of these materials will constitute a violation of the CASK Gene Foundation’s copyright and trademark rights.

Linking to our Website. You may link to Our Website or to any of its pages without having to ask permission. However, you must do so in a way that is fair and legal and does not infringe Our rights in particular relating to Our logo, acronym and intellectual property rights. A link should not be used for the promotion of any other commercial products or services. You must not establish a link in such a way as to suggest any form of association, approval or endorsement on Our part where none exists. You must not establish a link to Our site in any website that is not owned by you.

Indemnification. You will indemnify, defend, reimburse and hold harmless the Foundation, and each, subsidiary, affiliate, division, officer, director, employee, contractor and agent of the Foundation, for, from and against any and all liabilities, claims and expenses of any type or nature, including costs and attorneys’ fees, that arise from the exercise of the License set forth above or from your use of the Site.

Content and Advice. The Materials on Our Website are provided for general information and educational purposes only. It is not intended to replace medical advice on which you should rely. We cannot respond to questions concerning the medical aspects of a specific CASK gene disorder case. We do not employ qualified medical personnel or information specialists to give medical advice, diagnose illness, or offer referrals outside the geographical area of the license that governs their professional practices. You must obtain professional or specialist advice before taking, or refraining from, any action on the basis of the Materials on Our Website.

Please note that We may update Our Website from time to time, and may change the Material at any time. However, any of the Material on Our Website may be out of date at any given time, and We are under no obligation to update it. We do not guarantee that Our Website, or any Material on it, will be free from errors or omissions.

Applicable Law and Jurisdiction. This Agreement will, for all domestic and international purposes, be governed, interpreted, construed and enforced solely and exclusively in accordance with the laws of the State of Utah, without regard to its conflicts of law provisions. Exclusive jurisdiction for any claim or action arising out of or relating to these Conditions of Use or your use of the Site will be in the state or federal courts located in Salt Lake County, State of Utah. By using the Site, you hereby submit to the exercise of personal jurisdiction of these courts for the purpose of litigating any such claim or action.

International Use. The Site is based in the U.S. If you choose to access the Site from any location outside this area, you accept full responsibility for compliance with the laws of the jurisdiction where the access occurs. The Foundation makes no representation that the Site or the Site Materials are appropriate or available for use in locations outside the U.S. Accessing the Site or using any of the Site Materials from any jurisdiction where access or use is illegal is prohibited.

Changes to Conditions of Use. Any future changes We may make to Our Conditions of Use will be posted on this page. Please always verify whether you have consulted the latest version of the Conditions of Use. Your continued use of Our Website constitutes your agreement to this Conditions of Use and any updates thereto. These Conditions of Use were last modified and revised in July 2022.

Integration and Severability. These Conditions of Use along with the Privacy Policy, posted elsewhere at the Site, constitute the entire agreement between the Foundation and you with respect to the Site and supersede all prior or contemporaneous communications and proposals with respect to the Site. If any provision of these Conditions of Use or the Privacy Policy are determined to be invalid or unenforceable, all other provisions thereof will remain in full force and effect.

Contact. Questions, comments and requests regarding these Conditions of Use are welcomed:

Email us at: info@caskgene.org Attn: Webmaster

Leave a voicemail at: 801-210-0777

Or write to us by mail: 1576 S 200 E, Orem UT 84058