The MDF went to Washington, DC, last week to represent the DM community and participate in the Rare Disease Legislative Advocates Conference and Lobby Day.
Terms of Service
The MDF Website is an internet-based information and communication website service which seeks to provide information to the public related to Myotonic Muscular Dystrophy. This site provides support and information to patients, family members and health care providers. This World Wide Web site and all of its linked files and other information are a complimentary information service provided and moderated by other individuals concerned about the effects of myotonic dystrophy and use of this website is offered with the express condition that you agree to be bound by the terms and conditions set forth in this User Agreement. By viewing, accessing and/or using this site, you agree to be bound by the terms and conditions of this agreement set forth below.
1. This site is intended for personal, non-commercial use only. MDF and any moderator(s) of this site reserve the right to change these terms and conditions any time and for current terms and conditions you must consult the most recent version of this User Agreement each time you view the Website. The full terms of this agreement are contained in web pages regarding the User Agreement. You agree to review this agreement each time you access this site to ensure you are aware of modifications. Your continued access or use of this site shall be deemed your acceptance of the modified agreement. Do not use the Website if you do not agree to all of the following terms and conditions.
2. The Myotonic Dystrophy Foundation (MDF) is a charitable organization pursuant to a tax exemption granted under §501(c)(3) of the United States Internal Revenue Code. The phrase Myotonic Dystrophy Foundation, the initials MDF when used herein, its logo and the content of this site is owned or controlled by MDF and is protected under applicable copyright and trademark laws. You may download content only for your personal use for non-commercial purposes, but no modifications or further reproduction of the content is permitted without the express prior written consent of MDF.
3. Information posted to the site and opinions offered by individual members on this website, and any other linked sites are provided for educational and informational purposes only. This site is a public resource of information on myotonic dystrophy (DM) which is intended, but not promised or guaranteed, to be correct, complete, or up-to-date. The information on this Website and any related forums, bulletin or “Chat” boards is provided "as is" for general information only. The information provided on this site is not intended to treat or diagnose any medical condition nor is it intended or suggested to substitute for the diagnoses or treatment by qualified medical professionals. The contributors, reviewers, moderators and other members of this site make no warranties of any kind regarding this website, including but not limited to any warranty of accuracy, completeness, currency, reliability, merchantability or fitness for a particular purpose, or any warranty or guarantees of any kind. MDF reserves the right to delete, modify or supplement the content of this site and related chat boards at any time for any reason without liability or notification to anyone. Any communications you send to this site or otherwise to MDF are on a non-confidential basis, and MDF is under no obligation to refrain from reproducing, publishing, or otherwise using them in any way or for any purpose. To the extent you submit content to this site that is subsequently used by the MDF, you assign the right to use of said content to MDF for any purpose whatsoever without payment of royalties or any other consideration whatsoever.
4. Research and medical understanding regarding myotonic muscular dystrophy is constantly evolving and changing. The information on this site should not be considered complete nor should it be relied upon to suggest a course of action for a particular individual. Any information or opinions provided are not intended to be a substitute for a personal consultation with a qualified health care provider. If you have or suspect you have myotonic dystrophy or any health problem, you should personally consult with a health care professional. Information and opinions posted should not be construed as an attempt to offer or render a medical opinion or otherwise engage in the practice of medicine. It is further emphasised that health care related questions regarding appropriateness of diagnosis, treatment, diet or fitness programs or other posted treatment for individuals should be directed to qualified health care providers. Any information provided on this site related to suggested diagnoses or treatment is intended as suggestions and information for health care providers and is not intended to diagnose or treat a particular individual. The review of any information on this site by medical professionals assisting MDF is for informational purposes only and is not a professional representation by any such individuals as to the accuracy of said information or the suitability for treatment of any particular patient or groups of patients. You should never disregard medical advice or delay in seeking any medical treatment or advice because of something you have read on this site.
5. The Myotonic Dystrophy Foundation assumes no liability for the reliability of contents or for damage or injury to persons or property arising from use of any information including but not limited to, physician names or information, web page content, idea(s), chat, bulletin board, forum content or product(s) found or mentioned on this website. Reliance on any information or opinions posted is solely at your own risk. You agree that you will hold harmless, MDF, its directors, officers, consultants and agents, moderators, resource group members, Blue River (the host and software provider for MDF) and any other members or contributors of information to this website, from all claims arising out of or related to your access or use of, or your inability to access or use, this Website, chat boards or the information contained in this Website chat boards or other websites to which it is linked. In no event will MDF its officers, directors, consultants, employees, agents, moderators, resource group members, any other members or the contributors of information to this Website be liable to you or anyone else for any decision made or action taken by you in reliance on such information or for any consequential, special, or similar damages, even if advised of the possibility of such damages.
6. MDF website sections may provide links to other websites, chat or bulletin boards, forums, blogs, or websites. In addition, this site may contain information related to professionals who have or may have some experience in treating patients with myotonic dystrophy or of companies providing products or services to such patients. These links, information or mentions are provided for convenience only and are not intended as an endorsement by MDF or its directors, employees, consultants, agents or affiliates of the information provided or of the qualifications of said individuals or service providers.
7. MDF grants permission to anyone wishing to link to this website without misrepresentation; MDF will remove any link from this website upon request from the linked entity; this website is not sponsored or associated with any particular linked entity unless so stated herein; and the existence of any particular link is simply intended to imply that it may be of potential interest to the reader. This Website can be accessed from the United States and other countries around the world. MDF and its directors, employees, consultants, agents or affiliates make no representation that materials on the Website are appropriate or available for use in any or all locations, those who choose to access this site do so at their own initiative and are responsible for compliance with all local laws. In compliance with the Digital Millennium Copyright Act, MDF has appointed Molly White as MDF's agent to receive notification of claimed infringement from a copyright owner.
8. The individual works of authorship and other information contained in this Web site, including but not limited to web pages, message board posts and research articles is the property of MDF or of individual or organization posting such information and said works or information may not be copied, reproduced, transmitted, displayed, performed, distributed, rented, sublicensed, altered, stored by subsequent use, or otherwise used in whole or in part in any manner without prior written consent of the author or copyright holder, except that you may make such temporary copies in a single computer's RAM and hard drive cache as are necessary to browse the Web site, and you may make one permanent printout of each page of the Web site (unmodified in form, with a copy of this Site Notice attached) to be used by you for personal and non-commercial uses.
In addition to the above conditions, access to patient forums or other restricted membership based forums is based upon the following additional terms and conditions.
9. The Myotonic Dystrophy Foundation (MDF) Community Forum is designed to assist individuals in sharing information related to myotonic dystrophy. MDF sponsors this community site to encourage individuals or family members with myotonic dystrophy - particularly those who do not have access to a "in person" support group - to share their experiences and frustrations. The boards are intended primarily for patients and their families rather than health care providers or other professionals, although they are always welcome to drop in and visit.
10. Please remember that there are different types of myotonic dystrophy and the information relevant to each type may differ. In addition, as this disease is highly variable, one patient’s condition, even those with a similar number of repeats, may not reflect your current condition or future condition. Therefore, posters should remember that while access is provided to all boards, specific information provided by one patient may not relate to your type. The boards are provided as support for and a tool for people living with myotonic dystrophy, as well as family members and friends of people living with myotonic dystrophy. Members of this agree that all posts to group discussion sites must be on topic (myotonic dystrophy and health related issues) and respectful of other group members. Patients, family members, and friends should feel free to post news and information about up-coming events or initiatives, as well as ask questions and network with others.
11. All messages on this community site represent the personal opinion of the individual posting the message. While members or employees of MDF board may post comments to the board(s), they are not experts and such views do not reflect any official position, commentary or endorsement of MDF. When such individuals post, they do so as individuals to express their own personal opinion only. Any opinions or information expressed represent individual opinions and are not the expressed or authorized views of MDF.
12. The Myotonic Dystrophy Foundation and the moderators do not assume any responsibility for verifying the identity of any participant or for the content of any message posted here. Nothing on this site or any bulletin board should be considered medical advice.
13. Any forums or membership sections of this site are for the use by myotonic dystrophy patients’ families, or affected individuals and are maintained as a private semi restricted forum however, MDF does not and cannot monitor any bulletin boards 24 hours a day, and is not responsible for the contents, accuracy, completeness, or usefulness of any messages posted. Views expressed by message authors are not necessarily those of MDF its employees, directors or agents. If you feel that a posted message is objectionable, please e-mail us immediately at email@example.com. MDF can and may remove objectionable messages. Message removal is a manual process and may not occur immediately. MDF can not and does not guaranty the confidentiality of any information posted to the boards or forums. Information posted to the message boards on this site may contain the private diagnosis and treatment(s) of members. By entering into our this Agreement, you agree that, with respect to other users' personally identifiable information that you obtain through the site or through a related communication, you will only use this information for website related communications on this site.
14. You expressly agree that you will not reveal any information obtained about another individual from this site. You agree, through your use of this service, that you will not use any bulletin board(s) to post any material that is knowingly false and/or defamatory, inaccurate, abusive, vulgar, hateful, harassing, profane, threatening, sexually explicit, invasive of a person's privacy, or that otherwise violates any law. Further, you may not place on the site any material that is encrypted, commercial or charitable solicitations or unauthorized advertising, infringes on copyright, invades anyone's privacy, or encourages conduct that would constitute a criminal offence, give rise to civil liability, or that otherwise violates any local, state, federal, national or international law or regulation.
15. You also agree that you will not use the bulletin board for commercial or charitable solicitations or purposes. “Commercial” or “charitable” as used for purposes of posted messages means communications whose primary purpose is to advance the business or financial interests of any person or entity, or otherwise to promote a financial transaction for the benefit of the author or entity mentioned either directly or indirectly. Examples of prohibited communications include advertisements for products or services, notices regarding sale or rental of products, or direct solicitations of bulletin board viewers to purchase products or services. The policy is not to prohibit discussion by members of products or professional services; rather it is to prohibit advertising or attempts to sell such products and services.
16. You agree not to post any copyrighted material unless the copyright is owned by you or by MDF. You are responsible for ensuring that any material you provide to the site or post on a bulletin board or forum or elsewhere, including but not limited to text, photographs and sound, does not violate the copyright, trademark, trade secret or any other personal or proprietary rights of any third party or is posted with the permission of the owner(s) of such rights.
17. Members are further advised that while some limited steps are taken to maintain the privacy of the information posted to this site, the web and this site are not and can never be totally secure. Therefore members and other individuals posting information to this site should be aware that the information posted could and will likely be accessed by outside parties.
18. Although MDF does not and cannot review the messages posted and is not responsible for the content of any messages, MDF reserves the right to delete any message for any or no reason whatsoever. The removal or failure to remove any posts is not an indication of any warranty or acceptance of liability for the information contained therein. MDF reserves the right to reveal your identity (or whatever information we know about you) in the event of a complaint or legal action arising from any message posted by you. Posters of information or content (you), remain solely responsible for the content of your messages, and you agree to indemnify and hold harmless MDF, its directors, officers, consultants and agents, moderators, resource group members, Blue River (the host and software provider for MDF) and any other members or contributors of information to these boards, from any and all claims arising out of or related to the release of information by MDF, your access or use of, or your inability to access or use, this Website or the information contained in this Website or other bulletin boards or websites to which it is linked. In no event will MDF its officers, directors, consultants, employees, agents, moderators, resource group members, any other members or the contributors of information to this Website be liable to you or anyone else for any decision made or action taken by MDF or you in reliance on such information or for any damages including consequential, special, or similar damages, even if advised of the possibility of such damages.
19. Please note that advertisements, chain letters, pyramid schemes, and solicitations are inappropriate to this bulletin board and are a violation of board rules. If you criticize an organization, company, or individual, you MUST use your own name and e-mail address or your message may be deleted.
20. All site members are expected to abide by this agreement, and any breach of this agreement will be grounds for removal from access to the membership section(s) of the site and could subject a violator to further legal action. In the event that the MDF institutes any legal action to enforce the terms of this agreement, users agree that jurisdiction for damages or injunctive relief is proper in any U.S. State or Canada and the person seeking such relief shall not be required to post a bond. In the event MDF prevails in such legal action, you agree that you shall be liable for the attorneys’ fees and costs of MDF in such action and that your use of this site provides sufficient consideration for this provision.