In 1997, MDA attained a record-breaking Telethon pledge total of $50,475,055, scored several striking advances on the research front and restored coverage of medically prescribed leg braces to its comprehensive services program.

Of no less importance was the major expansion of MDA's World Wide Web site at www.mda.org. The site, which has existed for several years in a rudimentary form, underwent a major overhaul last summer and debuted in its new, greatly improved incarnation just in time for Telethon '97. (Public demand for information about MDA and neuromuscular diseases hits a peak at Telethon time.)

MDA national sponsor AT&T helped secure sufficient space on the Web to house the enormous amount of information that MDA wanted to include in its site. AT&T also donated design services through a consulting firm called Phoenix New Media so the information would be organized in a way that was intuitive, logical and appealing to the eye.

WHAT IS THE WEB?

The World Wide Web, the most colorful element of the global, electronic labyrinth of information called the Internet, is an ever-changing array of individual "sites" maintained by corporations, the government, universities, nonprofit organizations such as MDA and ordinary people.

Sites mingle text, pictures, interactive forms, and hot "links" that can sweep you off to another corner of the Web at the click of a mouse button. Web site content varies greatly, from a picture of someone's cat to a corporation's complete financial statements.

While the initial experience of "surfing the Web" can be confusing as well as exhilarating, many people with serious health conditions and disabilities have found the Internet to be an amazing resource.

How else can you search the catalogs of the Library of Congress, find out what's happening at the FDA and read the latest abstracts in the New England Journal of Medicine all for free and without leaving your home? (These sites and many others, including MDA's, are free, but others may charge for information or services.)

GETTING ONLINE

Most computers come pre-packaged with software such as Netscape Navigator or Microsoft's Internet Explorer to help you explore the Web with relative ease. You'll want a high-speed computer with a fast modem; otherwise, the frustration of waiting for Web pages to load on your screen could outweigh any benefits.

You'll also need to subscribe to an Internet service provider that has a local access number within your area code. (Check www.thelist.com and www.boardwatch.com for lists of providers broken down by area.) Many providers offer unlimited Internet access for a flat monthly fee of about $20, including use of an e-mail account.

Once you've taken the plunge and you're able to dial up MDA's Web address at www.mda.org, it's a good idea to drop by the What's New announcements, which are accessible from the main page. It's the best way to keep abreast of what's happening with MDA and to see what's been added to the site since this article was written.

WINDOW TO SCIENCE

From there you might want to proceed to the Research section, which offers an open window into the scientific work being done to discover treatments and cures for neuromuscular diseases.

First off, there's a List of Major Research Developments dating back to the 1970s. For late-breaking information, you'll also find the MDA Research Digest that provides brief summaries on recent and ongoing studies.

Still under construction as of this writing is the section on Research Grants, a complete list of financial awards supporting the work of researchers in the lab and the clinic, including the name of the grantee, the amount awarded and the goal of the study. Researchers who wish to obtain funding from MDA can print out Guidelines for Research Grant Application and fill out the required information before mailing or faxing it to MDA.

Of crucial interest to many individuals served by MDA is the section on Active Clinical Trials, a list of medical studies related to possible treatments requiring the participation of individuals with particular diseases. For each trial you'll find the name of the study, what disease is targeted, what the purpose of the trial is, who's eligible to participate and when and where it's being administered.

Also in the Research area you'll find links to medical and research sites that are maintained elsewhere on the Web.

CLINICS AND OTHER SERVICES

Phoenix New Media and MDA staff have created an interactive tool to make it easy to find out which one of the more than 230 hospital-affiliated MDA clinics is nearest to you. Simply enter your zip code and the system will provide the clinic name and location. You can also locate the nearest MDA offices and find a contact for MDA support groups in your area.

There's also a listing of all the MDA research and clinical centers that are specifically devoted to ALS, as well as information on MDA summer camp for youngsters and the MDA Art Collection, which was established in 1992 and which contains works created by people with neuromuscular diseases.

In addition, you'll find biographical information on members of MDA's National Task Force On Public Awareness, a special volunteer advisory body which consists solely of adults affected by neuromuscular diseases.

Keep browsing to get the scoop on a number of other key volunteers and lay leaders who help year-round, including MDA's National Goodwill Ambassador, MDA's National Youth Chairperson, and the Association's National Personal Achievement Award Recipient.

LIBRARY AT YOUR FINGERTIPS

The Web site houses electronic versions of many of the publications that MDA produces year-round, including back issues of Quest magazine, plus highlights from the current issue.

Those living with amyotrophic lateral sclerosis will find abundant information on the disease, including every issue of MDA's bimonthly publication The ALS Newsletter.

Historians of MDA's Telethon will be interested in the list of every celebrity who has ever appeared on the program over the last three decades. You can even enjoy classic video clips featuring Jerry Lewis and other stars in Quick Time video format.

There's a Search feature, something akin to a cyberspace librarian, that can comb through the contents of the entire MDA site and help you find what you need. For instance, entering "Charcot-Marie-Tooth Disease" will bring up links to a research update about the role of the cell membrane adhesion molecule myelin protein zero, articles about adapted vehicles and scoliosis, the Facts About Charcot-Marie-Tooth Disease brochure, and a clinical trial listing for a CMT study being conducted in Philadelphia.

MORE TO COME

For families fighting neuromuscular diseases, the best information often comes from others facing the same challenges. With this in mind, MDA will soon be establishing message boards on the Web site where visitors can post comments or questions as part of various message topics or "threads." This message capability will allow a sense of community and a free-flowing exchange of ideas, information, encouragement and advice.

The site will also have capabilities for live "real time" interaction, allowing two or more visitors to engage in simultaneous "chat" sessions on MDA-related topics. Eighteen-year-old MDA National Youth Chairperson Mandy Van Benthuysen, who has limb-girdle muscular dystrophy, is slated to serve as moderator for live chat sessions among teens with neuromuscular diseases.

MDA guests such as researchers and physicians will be able to participate in live interactive conferencing, discussing their work and providing immediate answers to questions from those with a disease, family members and other concerned parties. Helping a person communicate with a doctor or scientist from hundreds or even thousands of miles away is one of the very human benefits made possible by MDA's presence on the Web.

MDA will continue its commitment to maintaining a high-tech, interactive Web site. But the emphasis will always be on the human factor, and how this rapidly growing technology can be used to share information, improve communication, and have a direct and positive impact on the families and individuals MDA serves.