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The beginnings of CDKL5
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Terms & Conditions

Terms & Conditions of Use Agreement
International Foundation for CDKL5 Research
&
CDKL5.com

Thank you for visiting our site. In this Terms & Conditions of Use Agreement, “we”, “our” or “us” refers to International Foundation for CDKL5 Research & CDKL5.com and their affiliates (collectively referred to as “IFCR”). IFCR and affiliates provide use of the website CDKL5.com to you subject to the following terms and conditions.

PLEASE READ THE ENTIRE TERMS & CONDITIONS OF USE CAREFULLY BEFORE YOU USE ANY PART OF THIS WEBSITE. IF YOU DO NOT AGREE TO ALL THE TERMS & CONDITIONS SET FORTH HEREIN YOU MAY NOT USE THIS WEBSITE OR ANY OF ITS FEATURES OR SERVICES. BY USING THIS WEBSITE OR ITS FEATURES OR SERVICES, YOU ARE DEEMED TO HAVE ACCEPTED THESE TERMS & CONDITIONS OF USE IN THEIR ENTIRETY.

YOU MUST BE A U.S. RESIDENT AND BE AT LEAST 18 YEARS OLD TO USE THIS WEBSITE OR ANY OF ITS FEATURES OR SERVICES.

NO MEDICAL ADVICE

THIS SITE IS NOT INTENDED FOR RENDERING OR OBTAINING MEDICAL ADVICE. BY USING THIS SITE YOU AGREE THAT YOU HAVE READ AND ACKNOWLEDGE THE MEDICAL DISCLAIMER.

Effective Date: This Terms & Conditions of Use Agreement was last updated January 2017.

Website Privacy Statement
Account information and certain other information about you and our Members are subject to our Website Privacy Statement. For more information, please see our full
Website Privacy Statement.

This Terms & Conditions of Use Agreement (“Agreement”) sets forth the website use guidelines and standards of use of IFCR for Users and/or Members. By using the IFCR website you (as a “User” or a “Member”) agree to these terms and conditions. A “User” is defined as an unregistered visitor to the website (which means that you simply browse the IFCR website, including through a mobile device or otherwise attempt to use IFCR without being a registered Member). A User is different from a Member, whereas a “Member” has registered to establish an account on CDKL5.com and receive emails with news, current information, research updates and events. If you do not agree to the terms and conditions of this Agreement, you should immediately discontinue use or viewing of this website. If you wish to become a Member, communicate with other Members and/or make use of CDKL5.com, its forum and other features or services, you must read this Agreement and indicate your acceptance of the same during the registration process. We reserve the right, at any time, to modify, alter, or update the terms and conditions of this Agreement without prior notice. Modifications shall become effective immediately upon being posted at the IFCR website. Your continued use of the website after amendments are posted constitutes acknowledgement and acceptance of the terms & conditions of use and its modifications. Except as provided in this paragraph, this Agreement may not be amended.

1.0 Description of Service – Limited Use License Agreement

IFCR operates CDKL5.com, which is a complimentary information service website dedicated to anyone affected by CDKL5 and to finding a cure for CDKL5. CDKL5.com allows Members to create an online account in order to communicate with others affected by CDKL5, obtain email updates on research and information regarding CDKL5 and events and current information for IFCR. Any information provided by IFCR to a User is for non-commercial personal use only. You are licensed to use the Content only for non-commercial personal use and may download Content only as relevant to that use. The download of the whole or significant portions of any content or database is prohibited. Resale of any Content or database or portion thereof, is prohibited. Violation of this License Agreement may result in legal action being taken against you.

2.0 Proprietary Rights to Content

You acknowledge and agree that this site contains information, data, software, photographs, graphics, text, images, logos, icons, typefaces, audio and video material, and/or other material (collectively referred to as “Content”) protected by copyrights, trademarks, patents, service marks, or other proprietary rights, and that these rights are valid and protected in all forms, media, and technologies existing now or hereinafter developed.

All Content displayed on this site and all software, data and information used to provide this Web site and the Content, including text and images, method of display and presentation, source code, embedded routines and programs and other materials, as well as all copyrights, trademarks, service marks, patents and other intellectual property rights, or proprietary rights therein or thereto, are owned by IFCR, its affiliates, suppliers or licensors, and are protected under U.S. and international copyright, trademark and other applicable laws and treaties including international trade and export laws. All rights not expressly granted to you by us in this License Agreement are reserved to IFCR and you acknowledge and agree that you do not acquire any ownership rights by accessing or downloading copyrighted material or Content from the Web site as authorized hereunder.

Portions of IFCR may contain Member provided content (collectively referred to as “Member Content”) which includes but is not limited to information, postings, links, audio and video material, to which Members may view, search and may contribute appropriate Member Content. For this Member Content, IFCR is a distributor only and claims no ownership rights. By submitting Member Content to IFCR, Members grant IFCR, the foundational host of the Website, a license to use, host, distribute that Member Content and allow hosting and distribution of that Member Content, to the extent and in that form or context we may exclusively deem appropriate. Should a Member contribute Member Content to the site, it is understood that it will be seen and used by other Members and possibly Users under the License Agreement described herein. We are under no obligation to use the Member Content, in whole or in part, that a Member submits. Members should submit only Member Content which belongs to them and will not violate any law, property or other rights of any person or organization. Inappropriate Member Content provided to IFCR will be subject to immediate removal. IFCR in its sole capacity has the right to determine the appropriateness of any Member Content. Any Member who provides Member Content that has been deemed inappropriate will be subject to immediate membership termination and removal from the Website and Services.

You may not modify, remove, delete, augment, add to, publish, transmit, participate in the transfer, license sell, create derivative works from, or in any way exploit any Content, in whole or in part. If no specific restrictions are displayed, you may make one copy of select portions of the Content, provided that the copy is made only for your personal information and non-commercial use and that you do not alter or modify the Content in any way, and maintain any notices contained in the Content, such as all copyright notices, trademark legends, or other proprietary rights notices. Except as provided in the preceding sentence or as permitted by the fair use privilege under U.S. copyright laws, you may not upload, post, reproduce, perform, or distribute in any way any Content without obtaining permission of the owner of the copyright, trademark or other proprietary right.

3.0 Disclaimers

YOU EXPRESSLY UNDERSTAND AND AGREE THAT:

THE INFORMATION THAT IS PROVIDED IN THIS WEBSITE IS A PUBLIC SERVICE OF IFCR. IT SHOULD NOT IN ANY WAY SUBSTITUTE FOR THE ADVICE OF A QUALIFIED HEALTH CARE PROFESSIONAL AND IT IS NOT INTENDED TO CONSTITUTE MEDICAL ADVICE.

YOUR USE OF THE SITE IS AT YOUR SOLE RISK. THE SITE IS PROVIDED BY IFCR ON AN “AS IS” AND ON AN “AS AVAILABLE” BASIS ONLY. TO THE FULLEST EXTENT PERMITTED BY APPLICABLE LAW, IFCR MAKES NO REPRESENTATIONS OR WARRANTIES OF ANY KIND, EXPRESS OR IMPLIED, REGARDING THE USE OR THE RESULTS OF THIS WEB SITE IN TERMS OF ITS CORRECTNESS, ACCURACY, RELIABILITY, OR OTHERWISE. IFCR SHALL HAVE NO LIABILITY FOR ANY INTERRUPTIONS IN THE USE OF THIS WEBSITE. IN ADDITION, IFCR DOES NOT WARRANT OR REPRESENT THE FOLLOWING: (1) THE SITE WILL MEET YOUR REQUIRMENTS, (2) THE SITE WILL BE UNINTERRUPTED, TIMELY, SECURE, OR ERROR FREE, (3) THE RESULTS THAT MAY BE OBTAINED FROM THE USE OF THE SITE WILL BE ACCURATE OR RELIABLE, (4) THE QUALITY OF ANY PRODUCTS, SERVICES, OR INFORMATION, OR OTHER MATERIALS OBTAINED BY YOU THROUGH THE SITE WILL MEET YOUR EXPECTATIONS, (5) THE SERVER THAT MAKES THE SITE AVAILABLE IS FREE FROM VIRUSES OR OTHER HARMFUL COMPONENTS; OR (6) ANY ERRORS IN THE SOFTWARE WILL BE CORRECTED. ANY MATERIAL DOWNLOADED OR OTHERWISE OBTAINED THROUGH THE USE OF THE SITE IS DONE AT YOUR OWN DISCRETION AND RISK AND YOU WILL BE SOLELY RESPONSIBLE FOR ANY LOSS OR DAMAGE INCURRED, INCLUDING BUT NOT LIMITED TO, DAMAGE TO YOUR COMPUTER SYSTEM OR LOSS OF DATA THAT RESULTS FROM THE DOWNLOAD OF ANY SUCH MATERIAL. YOU (AND NOT US OR ANY OF IFCR’S AFFILIATED COMPANIES OR ANY OF OUR OR THEIR RESPECTIVE LICENSORS OR VENDORS) ASSUME THE ENTIRE COST OF ALL NECESSARY SERVICING, REPAIR OR CORRECTION FOR ANY SUCH DAMAGE.

NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU FROM THE SITE SHALL CREATE ANY WARRANTY NOT EXPRESSLY STATED IN THESE TERMS & CONDITIONS OF USE.

THE MATERIAL AVAILABLE THROUGH IFCR IS FOR INFORMATIONAL PURPOSES ONLY. BEFORE YOU ACT ON ANY INFORMATION YOU’VE FOUND ON THIS SITE, YOU SHOULD INDEPENDENTLY CONFIRM ANY FACTS THAT ARE IMPORTANT TO YOUR DECISION. IF YOU RELY ON ANY INFORMATION OR SERVICE AVAILABLE THROUGH IFCR, YOU EXPRESSLY AGREE THAT YOU DO SO AT YOUR OWN RISK.

IFCR DISCLAIMS ALL WARRANTIES WITH REGARD TO THE INFORMATION PROVIDED, INCLUDING THE IMPLIED WARRANTY OF MERCHANTABILITY, IMPLIED WARRANTY OF FITNESS FOR A PARTICULAR PURPOSE, AND IMPLIED WARRANTY OF NON-INFRINGEMENT.

SOME JURISDICTIONS DO NOT ALLOW THE EXCLUSION OF IMPLIED WARRANTIES; THEREFORE THE ABOVE-REFERENCED EXCLUSION MAY NOT APPLY TO YOU.

NO MEDICAL ADVICE
THIS SITE IS NOT INTENDED FOR RENDERING OR OBTAINING MEDICAL ADVICE. BY USING THIS SITE YOU AGREE THAT YOU HAVE READ AND ACKNOWLEDGE THE MEDICAL DISCLAIMER.

4.0 Limitation of Liability

IFCR SHALL NOT BE LIABLE FOR ANY DAMAGES WHATSOEVER, AND IN PARTICULAR IFCR SHALL NOT BE LIABLE FOR ANY DIRECT, SPECIAL, INDIRECT, CONSEQUENTIAL, OR INCIDENTAL DAMAGES, OR DAMAGES FOR LOST PROFITS, LOST INCOME, LOSS OF REVENUE, OR LOSS OF USE, ARISING OUT OF OR RELATED TO THE USE OR THE INABILITY TO USE THIS WEB SITE OR THE INFORMATION CONTAINED IN IT, OR FOR THE COST OF PROCUREMENT OF SUBSTITUTE GOODS AND SERVICES OR RESULTING FROM ANY GOODS OR SERVICES PURCHSED OR OBTAINED OR MESSAGES RECEIVED OR TRANSACTIONS ENTERED INTO THROUGH THE SITE OR RESULTING FROM UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OF DATA OR MEMBER CONTENT PROVIDED ON THE SITE BY YOU OR OTHER MEMBERS, WHETHER SUCH DAMAGES ARISE IN CONTRACT, NEGLIGENCE, TORT, UNDER STATUTE, IN EQUITY, AT LAW, OR OTHERWISE, EVEN IF IFCR HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.

SOME JURISDICTIONS DO NOT ALLOW FOR THE LIMITATION OR EXCLUSION OF LIABILITY FOR INCIDENTAL OR CONSEQUENTIAL DAMAGES, THEREFORE SOME OF THE ABOVE LIMITATIONS MAY NOT APPLY TO YOU. IF YOU ARE DISSATISFIED WITH ANY PORTION OF THIS WEB SERVICE, OR WITH ANY OF THESE TERMS OF USE, YOUR SOLE AND EXCLUSIVE REMEDY IS TO DISCONTINUE USING THIS SITE, SERVICE, AND ITS AFFILIATED SITES.

5.0 Waiver of Jury Trial

IFCR ALONG WITH ANY USER AND MEMBER HEREBY IRREVOCABLY WAIVE ANY AND ALL RIGHT TO TRIAL BY JURY IN ANY LEGAL PROCEEDING ARISING OUT OF OR RELATING TO THIS AGREEMENT OR ANY MEMBERSHIP AGREEMENT OR THE TRANSACTIONS CONTEMPLATED HEREBY.

6.0 Indemnification

You agree to indemnify and hold IFCR, its subsidiaries, affiliates, officers, agents, attorneys and employees, harmless from any claim or demand of any kind whatsoever, including reasonable attorneys’ fees and costs, made by any third party due to or arising out of the use of this Site, the violation of this Agreement, or infringement by User or Member of the Site using the User’s or Member’s computer, of any intellectual property or any other right of any person or entity.

7.0 COPPA Notice
CHILDREN ONLINE PROTECTION ACT NOTIFICATION

***Special Note for Parents or Guardians of Children

The Web site you are visiting was not designed for anyone under the age of 18. We are not responsible for any access or use of this Web site by children or minors under the age of 18. This Web site does not sell products designated for purchase by children under the age of 13 or anyone under the age of 18 nor is it designed for their use or entertainment.

Pursuant to 47 U.S.C. Section 230(d) as amended, we hereby notify you that parental control protections (such as computer hardware, software, or filtering services) are commercially available that may assist you in limiting access to material that is harmful to minors. Information identifying providers of such protections are available to you online.

Please see our COPPA Information provided in our Privacy Policy for more information regarding use of this website and children under the age of 13 and anyone under the age of 18.

8.0 Technology Export Control

Through the Bureau of Industry and Security and its use of the Export Administration Regulations, the United States government has implemented export control laws that regulate the export and re-export of technology originating from within the United States. This technology includes the electronic transmission of information or software. The export control laws regulate the exporting or re-exporting of this technology to foreign countries and to certain foreign nationals. You agree to abide by these laws and regulations, including but not limited to, the Export Administration Act and the Arms Export Control Act and not to transfer, by electronic transmission or otherwise, any Content derived from the Site to either a foreign national or foreign destination in violation of such laws.

9.0 Modifications and Interruption to Service

IFCR reserves the right to modify or discontinue the Website with or without notice to the User or Member. IFCR shall not be liable to a User, Member or any third party should IFCR exercise its right to modify or discontinue the Website. Each User and Member acknowledges and accepts that IFCR does not guarantee continuous, uninterrupted or secure access to our Website or Services and operation of our Website may be interfered with or adversely affected by numerous factors or circumstances outside of our operation or control.

10.0 Third-Party Sites

IFCR may include links to other sites on the Internet or World Wide Web that are owned and operated by online merchants, vendors, suppliers, manufacturers, material men, contractors, subcontractors, service providers and/or other third parties (collectively referred to as “Vendors”). Any such links to Vendors or third party sites are provided for your convenience only, and such links do not imply endorsement by IFCR of such other third party sites or Vendor sites or the content contained therein. You acknowledge that we are not responsible for the availability of, or the content located on or through, any third-party or Vendor site. You should contact the site administrator or webmaster for those third-party or Vendor sites if you have any concerns regarding such links or the content located on such sites. Your use of third-party or Vendor sites is subject to the terms & conditions of use and privacy policies of each site, and we are not responsible therein. We encourage all Users or Members to review said terms & conditions and privacy policies of all third-party and Vendor sites.

IFCR disclaims all warranties, express or implied, as to the accuracy, legality, reliability or validity concerning third party provided services and sites, and you agree that any recourse for dissatisfaction or problems with those services or sites will be sought from the third party provider and not from IFCR as you agree to waive any claim you may have against us with respect to such other sites.

11.0 Governing Jurisdiction

This TCUS will be governed by and construed in accordance with the laws of the United States of America, without regard to any principals of conflicts of law. You agree that any action at law or in equity that arises out of or relates to this Website or these Terms & Conditions of Use will be filed only in the state or federal courts located in Summit County, Ohio, and you hereby consent and submit to the personal jurisdiction of such courts for the purposes of litigating any such action.

12.0 Compliance with Laws and International Use

You assume all knowledge of applicable law and are responsible for compliance with any such laws. You may not use our website or services in any way that violates applicable state, federal, or international laws, regulations or other government requirements.

Furthermore, we make no representation that materials on this Website are appropriate or available for use in locations outside the United States, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this Website from other locations outside of the United States do so on their own initiative and at their own risk and are responsible for compliance with those local laws and regulations.

13.0 Copyright, Trademark and Service Mark Information

All Content included or available on this site, including site design, text, graphics, interfaces, and the selection and arrangements thereof is the property of IFCR, with all rights reserved, or is the property of IFCR and/or third parties protected by intellectual property rights. Any use of materials on the website, including reproduction for purposes other than those noted above, modification, distribution, or replication, any form of data extraction or data mining, or other commercial exploitation of any kind, without prior written permission of an authorized officer of IFCR is strictly prohibited. Users and Members agree that they will not use any robot, spider, or other automatic device, or manual process to monitor or copy our web pages or the content contained therein.

International Foundation for CDKL5 Research™ is a proprietary mark of IFCR. IFCR’s trademarks may not be used in connection with any product or service that is not provided by IFCR, in any manner that is likely to cause confusion among Members, or in any manner that disparages or discredits IFCR.

All other trademarks displayed on IFCR’s website are the trademarks of their respective owners and may only be used with the permission of the particular owner. These other trademarks constitute neither an endorsement nor a recommendation of those Vendors. In addition, such use of trademarks or links to the web sites of Vendors is not intended to imply, directly or indirectly, that those Vendors endorse or have any affiliation with IFCR.

14.0 Notification of Claimed Copyright Infringement

We respect the intellectual property of others and we ask our Users and Members to do the same. If you believe that your work has been copied and is accessible on the Website in a way that constitutes copyright infringement, you may notify us by providing our copyright agent the following information:

 
  1. A description of the copyrighted work that you claim has been infringed;
  2. Identification of the URL or other specific location on the Website where the material you claim is infringing is located;
  3. Your name, address, telephone number, email address, and statement that you are an authorized person to act on behalf of the own er of the copyright;
  4. A statement by you that you have a good faith belief that the disputed use is not authorized by the copyright owner, its agent, or the law;
  5. An affidavit submitted by you, sworn to and made under the penalty of perjury, that the above information in your notice is accurate and that you are the copyright owner or are an authorized agent to act on behalf of the copyright owner.
Pursuant to Section 512(c) of the Copyright Revision Act, as amended by the Digital Millennium Copyright Act, IFCR designates the following individual as its agent for receipt of notifications of claimed copyright infringement.

By Mail:
International Foundation for CDKL5 Research
Attn: Website Copyright Notice Dept.
P.O. Box 926
Wadsworth, Ohio 44282

By Email: IFCR@cdkl5.com

15.0 Botnets

IFCR retains the right, at our sole discretion, to terminate any Member accounts involved with botnets and related activities. If any hostnames are used as command and control points for botnets, IFCR reserves the right to direct the involved hostnames to a honeypot, loopback address, logging facility, or any other destination at our discretion.

16.0 Spamming
Use of IFCR by you for spamming is strictly prohibited. By using IFCR, you agree not to use information concerning other users of this Website, or any items such users have listed or searched for on this Website (including listing information, user names, email addresses, telephone numbers, and/or other information), for any purpose. You may not post information directed to or collect personal information from any child or minor under the age of 18.

17.0 Miscellaneous Terms

These Terms & Conditions of Use constitute the entire agreement and understanding between you and us, superseding any prior agreements and understandings, and govern your use of the Website. You also may be subject to additional terms and conditions that may apply when you use affiliate services, third-party content or third-party software. Our failure to enforce or exercise any right or provision of these Terms & Conditions of Use shall not constitute a waiver of such right or provision. If any provision of these Terms & Conditions of Use shall be unlawful, void or unenforceable for any reason, the other provisions (and any partially-enforceable provision) shall not be affected thereby and shall remain valid and in full force and effect. You agree that these Terms & Conditions of Use and any other agreements referenced herein, including the Medical Disclaimer, may be assigned by IFCR, in our sole discretion, to a third party in the event of a merger or acquisition. The section titles and headings in these Terms & Conditions of Use are for convenience only and have no legal or contractual effect.

No agency, partnership, joint venture, employee-employer or franchiser-franchisee relationship is intended or created by these Terms & Conditions of Use.

Any rights not expressly granted herein are reserved by and for us.

Certain sections or pages on this Website may contain separate terms and conditions, which are in addition to these Terms & Conditions of Use. In the event of a conflict, the additional terms and conditions will govern for those sections or pages.

I HAVE READ THIS AGREEMENT AND AGREE TO ALL OF THE PROVISIONS CONTAINED ABOVE.

© Copyright 2017, International Foundation for CDKL5 Research. All Rights Reserved.
© 2017