1. Overview:The Hemifacial Spasm Association (HFSA) is an online support group of current and former sufferers of Hemifacial Spasm (HFS) who offer their personal experiences and personal information to those who are coping with and treating the symptoms of HFS. The members of the HFSA provide information, understanding and hope, in a caring manner, for those who suffer from this affliction. The HFSA welcomes current and former HFS sufferers, including those who have had experience with medications, alternative treatments such as acupuncture, and/or surgery in the treatment of HFS, who wish to share their knowledge with others.
2. Costs:The HFSA is structured similar to a non-profit organization and costs you nothing to become a member. However, a small voluntary contribution may be requested, from time to time, to help cover the costs associated with the website, bulletin board and related Internet costs.
3. Obligations:The only obligations you assume in becoming a HFSA member is to adhere to the following dictates:
4. Membership:Membership in the HFSA is a privilege and the HFSA reserves the right to deny, suspend, or cancel any membership as they deem necessary in order to maintain the harmony of it's membership base.
You may, at any time, remove your name and membership from the association. Please follow the instructions provided on the website, bulletin board, and group e-mail service.
5. Code of Conduct:
5.1. Privacy:The Internet is an extremely open and public source of information and should be treated as such. With this in mind, do not post or, in any other manner, disseminate personal information of others without their specific authorization to do so. This would include an individual’s personal telephone number, address, etc. Additionally, use discretion in determining the degree to which you share similar personal information. Information contained in your Member Profile and on our entire website is available for viewing by anyone with Internet access. As we continue to grow, it is difficult, if not impossible, to logically follow the flow of posted information using first names only, and consequently, it is requested that you include your first and last name.
5.2. Civility:The primary purpose of the HFSA is to function as an online support group for individuals suffering with Hemifacial Spasm. Therefore, to be successful, it is imperative that we, at all times, be respectful and sensitive to the feelings and opinions of others. We must also be aware of the potential for ambiguities in text communications that could unintentionally offend a fellow member. If a post should offend, or if you are unclear as to the intent, it is best to contact the individual that posted the message privately to clarify the intended meaning of the post. In the unlikely event that, following such private dialogue, the issue is still not resolved, you may forward copies of all e-mails along with any additional relevant comments related to the incident to the MOC for review.
The current members of the Committee and their contact information is as follows:
The HFSA was subsequently structured consisting of two
major operating committees: |
1. The Membership Oversight Committee (MOC) was formed to oversee the general membership of the Association. It is currently composed of two members:
Examples of prohibited conduct would include, but not be limited to, harassing, libelous, abusive, threatening or otherwise objectionable communications of any kind; spam, chain letters, junk mail or any other type of unsolicited mass e-mail, etc.
5.4. Ethics:Members who do not conform to the standards of conduct set forth in this document will be subject to suspension or cancellation of their membership.
6. What This Site Is:
6.1. Content:This website is a repository of information relating to the HFSA and its members, including profiles and overviews of HFS medical history from members who wish to share their experiences with HFS and its treatments; information regarding Hemifacial Spasm, links to relevant professional medical resources and professional clinical research data.
6.2. Function:This website is also a forum for the asking and answering of questions, the day-to-day sharing of experiences related to HFS and its treatments and for the support and encouragement of its members. This is accomplished through the exchange of e-mails among members within a shared e-mail group and posts to the bulletin board. Others may view the e-mails and posts previously exchanged among members for their relevance to a sufferer’s condition and/or potential treatment.
6.3. Purpose:The purpose of this website is to provide positive support to HFSA members in their time of emotional anguish, to ask and answer relevant questions, to undertake open and honest discussions, and to share experiences about medications, alternative treatments and/or surgery.
6.4. Data Requests, Gathering & Posting:At the discretion of the Site Moderator, data pertaining to HFSA members may be requested, gathered and posted on the website. Members are under no obligation to provide any requested data. The results will be a compilation of information about HFSA members such as name, age, occupation, onset and elapsed time of HFS, doctors seen, medications taken, etc. The purpose of such compilations is for the benefit of anyone seeking HFS information, including HFS characteristics, medications taken, surgeries undertaken, etc.
7. What This Site Is Not:
The HFSA will not condone actions such as the following by any member:
8. Copyright Notice:Hemifacial Spasm Association, its abbreviation (HFSA), Domain Name (hfs-assn.org) and logo are copyrighted, all rights reserved. Without prior written consent of the HFSA Association Oversight Committee, any unauthorized use, in whole or in part, is prohibited by law.
9. Disclaimer:The information you view on this website and links to other related websites listed below are provided to you as information and for educational purposes only, and are not to be interpreted as an endorsement, recommendation or approval of anyone, any product or treatment. The information links presented are not to be considered complete, nor does it contain all medical resource information that may be relevant and, therefore, is not intended as a substitute for seeking proper medical treatment and/or appropriate care.
This website does not endorse, advocate or warrant the accuracy or reliability of information provided. This website is also not responsible for any omissions or errors, or any actions that may arise from omissions, errors or representations made by those websites which may be linked ... nor exert responsibility, editorial or other control over the contents. Furthermore, you, the user, assume all risks associated with the use of any information you obtain, directly or indirectly, from this website and your reliance upon it.
The proper course of treatment for any individual may vary from what is appropriate for other individuals, due to the actual condition and/or complications of that person. You should always consult your own medical team before proceeding with or deciding upon any course of treatment related to information presented on this website or elsewhere. It is understood that you need to visit with your own healthcare provider in order to reach a diagnosis for treatment.
Information contained on our entire website, including member information, is available for viewing by anyone with Internet access.
By using this website, you agree to hold harmless, and shall not seek remedy in any court of law from the owners of this website, or any of its members. They shall disclaim all liability to you for damages, costs and expenses, including legal fees because of your reliance upon anything derived from this website or its contents and, furthermore, assumes no liability for any and all claims arising out of said use... regardless of the cause, effects or fault.
By joining the HFSA, you agree to the above terms and conditions.