The Web is more and more often the first place that parents look for information when they get the news that their child has been diagnosed with type 1 diabetes, which is sometimes known as juvenile-onset diabetes. That's why the Juvenile Diabetes Research Foundation International is revamping its Web site in early 1998.
Research is JDRF's reason for being.
"Right now we are getting ready to update a lot of our pages and give the whole site a facelift," says Eric Schutt, the site's webmaster and JDRF's assistant director of government relations in Washington, D.C. JDRF had 18 different pamphlets in its information and publications section that they are redoing.
"We found a lot of our material was outdated, so we took it off," Schutt says. "When it is back on-line, it will be an exciting feature for parents and the general public to learn about diabetes."
Schutt just took responsibility for JDRF's site in November, although he joined the organization in 1994 as a legislative advocate. That's what used to be known as a lobbyist.
The change in title from lobbyist to legislative advocate is more than semantic. Washington changed so much in the 1990s that members of Congress don't want to see a representative of an organization in their offices any more. "They want to see constituents," Schutt says. "So most of what I do in my government relations work is educating volunteers to the importance of speaking out."
That's one reason why he thinks that the government relations section of the JDRF site is so important. "We are pretty proud of it," Schutt says. "It has everything from current legislative alerts and updates and how to find your congressperson to what JDRF fights for on Capitol Hill."
One of the pages on the JDRF site that I have found to be useful is its directory of members of Congress who are members of The Congressional Diabetes Caucus (this directory is apparently no longer available). Another thing that I especially like about the site is how fast its pages load. Schutt says that by using few graphics, particularly on the lead page of each section, they are implementing a conscious strategy of making the site user-friendly.
Many of the heart-warming stories that Schutt knows naturally stem from his involvement with government relations. "Many people tell me that they just got a letter back from their legislators saying that they voted the way we needed on diabetes research issues," he recounts. "These volunteers feel the empowerment that one person can have in helping to increase research funding that will hopefully lead to a cure in the near future."
Not surprisingly, a big part of the site's focus is on research. Funding research is JDRF's whole reason for being. The American Diabetes Association and JDRF are America's two largest nonprofits, according to NonProfit Times.
In 2001 the ADA was the nation's 55th largest nonprofit organization with income of $166,672,457. The organization spent $124,408,669 on programs, $30,654,057 on fundraising, and $8,529,881 on administration.
At the same time the JDRF was the 69th largest nonprofit with income of $148,551,162. The organization spent $149,665,240 on programs (including research), $12,646,042 on fundraising, and 9,904,788 on administration.
Schutt also has plans on making much more research information available on the site. One of his goals is to be able to correct reports of supposed cures for diabetes. "I can count four or five times where it's been announced on the morning news that a cure for diabetes has been found, when in fact someone was misquoted," Schutt recalls.
About 25,000 visitors each month come to JDRF's home page, but that's still small compared with the number of people who fund the organization. While JDRF doesn't keep track of individual members, Schutt says, its Countdown magazine goes to about 130,000 people who fill out a $25 membership card.
One thing that surprised me is that none of JDRF's funding comes from the U.S. government. The organization does create partnerships with the federal government to fund research, "but that money never comes into our pockets," Schutt says.
Research rather than the Web site will always be JDRF's first priority, Schutt says. "But the Web site is important as a communications tool."
And do people ever communicate with him! "Because we are recrafting it, this is a fun time to be involved with the Web site," he says. "It is fun to get those e-mails about the types of things on the JDRF site that people think would make their lives better.
I wrote this article originally for the Web site of the American Diabetes Association as one of my “About the Internet” columns. The ADA, however, did not publish it.
Written: January 8, 1998; partially updated July 18, 2003.
Until the end of 2000 the organization was known as the Juvenile Diabetes Foundation International. At that time it began to change its name to the Juvenile Diabetes Research Foundation International.
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