NOTE: The NMSS (Gen. Mike Dugan, CEO NMSS) Has Decided NOT To
Listen To The Voice Of PWMS In The Form Of The NMSS-IAC. Gen Dugan Disbanded The
IAC Without Notice.
It Could Have Been A Good Idea.
original memo from the
NMSS Education Department that created the IAC. The initial Job Description for members of the
NMSS-IAC. This document will also be and the current statement
of NMSS Internet Polices and Practices as they currently exist (last
revised 9/10/97).
I think we can get even more creative with a little input from everyone. It doesn't
take much to get a lot done. Please let Gen. Mike
Dugan, NMSS CEO know what you think.
Since the launch of the NMSS Home Page, we have received numerous comments and
suggestions on ways to improve our web site. Many of these suggestions have come from
people with MS or family members who are true experts and fans of the Internet. In order
to capitalize on their expertise and to expand our Internet workforce, we have decided to
form an NMSS Internet Advisory Council.
The job description for this Council is attached. We are seeking
volunteers with Internet experience and the time and interest to monitor the Internet. The
group will only meet on conference calls and electronically.
I invite you to look around your chapter and nominate those individuals who could
provide assistance through this Council. An application form is attached.
To ensure the NMSS Internet web site
meets the needs of all people affected by multiple sclerosis, this Council is to be
charged with providing ongoing feedback for improvement of presentation, content and
technical scope.
Access to the Internet and World Wide Web.
Expertise and interest in Internet communications. E-mail access.
Selection and Term of Appointment:
Advisory Council members will be selected
by the NMSS Internet Committee. Applicants can be self-nominees or nominated by local
chapters. The term of the appointment is two years. Half of the committee will rotate off
each year. (During the initial year, one and two year terms will be assigned by
lottery.)
Training Provided:
Orientation to NMSS, NMSS web site and web
site policies and practices.
Council Size and Meetings:
The council will have 12 members. The Council will
meet three times a year via conference call. Interim electronic meetings will be held as
necessary.
Visitors to our home page are not required to sign the guest book. Because a
requirement to reveal their identity might inhibit some people from obtaining the
information at the site, we strongly advise that Chapters setting up home pages not
require anyone to sign a guest book in order to access information.
CHAPTER DOMAIN NAMES
Smallworld Software, the National service provider, has registered domain names
for all Chapters. This is simply the three letter Chapter code plus nmss.org. (For example
Gateway Area Chapter's domain name is mos.nmss.org.) According to a report from the
National Health Council dated November 18, 1996, "domain names can only be in lower
case letters. As a result, no design is permitted and a party may not distinguish its
domain name by capitalization, stylized format or other design". Additionally, domain
names are limited to 24 characters.
A Chapter that decides not to use the domain name National has registered can select and
register another domain name, and the Chapter will be responsible for the cost of
registration. The NMSS Management Team strongly suggests that Internet addresses
("URLs") maintain a "look" that is consistent with the following
format:
chaptername.nmss.org (i.e., alabama.nmss.org)
In the case of a non-statewide Chapter, the Chapter should choose a term describe
pertinent geography (i.e., sfbayarea.nmss.org).
WHAT CHAPTER HOMEPAGES SHOULD INCLUDE
Chapters should include information about local fund raising, regular service programs,
self help groups, events, local resources, chapter newsletters, requests for volunteers,
etc.
WHAT CHAPTERS SHOULD NOT INCLUDE
Chapters should not mount information on MS the disease or research or federal advocacy
issues. Chapters should link directly to the National home page for this information. This
will assure that all information is kept up to date, has been approved by the proper
experts and is consistent across the nation. (This is also a cost saving for Chapters, as
they will not have to pay for mounting a considerable volume of important information.)
Chapters can contact Julie Berger at the National Office if they need specific linking
information; however, most service providers can link to the whole section without
additional information.
NATIONAL REQUIREMENTS FOR LINKS TO CHAPTER HOME PAGES
The following are requirements for a Chapter page to be linked to the National page:
Chapter must use logo on first page of web site and the logo usage must be correct. Logo
is not to be used as a "hot button" icon. National can send you both large and
small logos on disk if you need them.
Chapter must not present any MS disease information or research information other than
links back to the National home page. Please note that only the following approved
definitions of MS, which were revised in May, 1997 may be used:
Standard Description of Multiple Sclerosis (Long Version)
Multiple sclerosis (MS) is a disease that randomly attacks your central nervous system,
wearing away the control you have over your body. Symptoms may range from numbness to
paralysis and blindness.
MS is a devastating disease because it is so unpredictable. The progress, severity, and
specific symptoms of the disease cannot be foreseen. You never know when attacks will
occur, how long they will last, or how severe they will be.
Most people are diagnosed with MS between the ages of 20 and 40, but the unpredictable
physical and emotional effects are lifelong.
The National MS Society is dedicated to ending the devastating effects of multiple
sclerosis.
Standard Description of Multiple Sclerosis (Short Version)
MS is a chronic, often disabling disease that attacks your central nervous system. The
progress, severity, and specific symptoms of the disease cannot be predicted; symptoms may
range from numbness to paralysis and blindness. Most people with MS are diagnosed between
the ages of 20 and 40, but the unpredictable physical and emotional effects are lifelong.
The National MS Society is dedicated to ending the devastating effects of multiple
sclerosis.
Chapter must follow basic design format of National home page.
Any external links must be approved by the National Office.
The following information disclaimer must be used on the first page of the site:
The National Multiple Sclerosis Society is proud to be a source of information about
multiple sclerosis. Our comments are based on professional advice, published experience
and expert opinion, but do not represent therapeutic recommendation or prescription. For
specific information and advice, consult your personal physician.
Information must be copyright protected, and this must be on the first page of the site.
Copyright belongs to the National Multiple Sclerosis Society. The syntax to be used is:
It is strongly suggested that the advertisement disclaimer used in Chapter Newsletters
and INSIDE MS be included if "products, services, or manufacturers" are named on
the site.
It is essential to have signed media releases from all persons whose photographs appear
on the web site.
EXTERNAL LINKS
Background
The National Multiple Sclerosis Society has the opportunity to expand the value and
depth of the NMSS Home Page on the World Wide Web through links to other Web sites;
however, because the transfer from the NMSS home page to a non-NMSS page is seamless when
exploring information of the World Wide Web, it is critical the pages to which we link
support the same high levels of information standards as does the National MS Society.
To ensure that we link only to those organizations' pages with the highest integrity,
the National Office has developed a policy regarding organizations with whom we will link.
We cannot control who links to us, but we can screen and control to whom we link.
Policy:
Therefore, the following guidelines must be followed in selecting sites for links from
the NMSS Home Page or from the NMSS Chapter Home Pages to other web sites:
Core information of linked website should directly relate to and enhance information
provided on the NMSS Home Page. This information should not duplicate information provided
on the NMSS Home Page.
Website should be supported by a knowledgeable and reputable organization or company.
Website should be regularly updated (as appropriate).
Website materials have been reviewed by an appropriate editorial board or equivalent.
Commercial website linkages are limited to approved partnerships, national sponsors and
sites that provide information that enhances our information. All other linkages (e.g.,
third party fund raisers, local events pages, local commercial programs) are referred to
Chapters for a decision on whether they will provide a link from their local Chapter page.
Practice
NMSS will notify other websites of our intent to link to their site.
NMSS will routinely and regularly review linked sites.
NMSS will use a disclaimer at the beginning of the Links section on our Home page
stating we do not endorse organizations or products on linked Home pages, but provide
these links for information purposes (see below):
Internet External Linkage Disclaimer
Any reference to a commercial or non-commercial product, process, service, or company is
not an endorsement or recommendations by the National Multiple Sclerosis Society. The
National MS Society is not responsible for the contents of any "off site"
Internet information referenced by or linked to the National MS Society's Internet site.
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