February 2001

Diverse Missions—Educating Patients and Their Families 

Information is a valuable weapon in the battle against disease, and a number of nonprofits are working to put that weapon into the hands of patients and their families. Men Against Breast Cancer (MABC) in Rockville, Maryland, is developing "Survival Skills for Men," a program to "educate and empower men...to become effective caregivers when breast cancer strikes their family." "Breast cancer," explains MABC president and cofounder Marc Heyison, "is a family issue with devastating effects on the entire family."

The National Reye's Syndrome Foundation in Bryan, Ohio, is engaged in a campaign to inform adults that Reye's Syndrome affects people of all ages. Although aspirin bottles warn users not to take the drug to treat symptoms of viral diseases such as a cold, the flu, or the chicken pox, most people believe that only children contract Reye's Syndrome. Unfortunately, reports Susan Landversicht, the foundation's director of development, "No age is immune! Adult cases of Reye's Syndrome go undiagnosed (misdiagnosed) and are not discovered until it is too late. ... [Our] biggest challenge is educating the population to the fact that adults also get Reye's, and most die."

Nonprofits also work to provide information to individuals coping with little-known or misunderstood diseases. Gail Kansky, president of the National CFIDS Foundation in Needham, Massachusetts, finds that "the hardest part" of her job "is keeping our members current and trying to keep their spirits up amid so little research and so much misunderstanding about" chronic fatigue and immune dysfunction syndrome.

She explains, "People who suffer daily from an illness and one that is also so misunderstood are not only cursed with the disease but with the ignorance and misinformation on it as well. When we can actually have a child diagnosed due to our educational literature instead of being punished for being sick ... or an adult get disability payments by providing information about what is needed, it makes it more than worthwhile while we wait for research to unravel the mystery of the disease and, eventually, find out how to block the effects."

According to Heather C. Guidone, director of operations of the Endometriosis Research Center (ERC) in Delray Beach, Florida, women who have endometriosis encounter similar prejudices. "There are many who would treat this disease as an insignificant issue and who do not understand the far-reaching impact Endometriosis can have on the life of a patient."

Last year, the ERC turned to technology to combat the problem, sponsoring an Internet symposium about the latest research on and options for treating the disease. The "event was so successful that we have been able to secure repeat sponsorship for the 2001 event. ... The ERC's understanding and use of new media enables us to reach out all over the globe; not only to women and their families, but also to collaborate with scientists and physicians on disease research."

Jane Massey, chief operating officer of the March of Dimes, finds that patients and their families want this kind of information. The March of Dimes is "seeing a much higher demand for information" as the number of calls to its Resource Center increases. Massey believes that people are contacting the March of Dimes because they want information they can trust. "The public," she observes, "is demanding a higher quality of credible information."

Other nonprofits are encountering the same thing. Dave Switzer, marketing and public relations director of the PKD Foundation in Kansas City, Missouri, relates, "The demand is greater than ever for the services of the PKD Foundation. As more people discover they have polycystic kidney disease, they want information about it. ... Patients and their families want to know where the latest research stands in the field."

Delores M. O'Leary, director of the Sarcoid Networking Association in Sumner, Washington, reports that the organization is receiving more "calls from individuals for assistance in finding out more about this disease be they the patient, family, friends or co-workers." The number of calls seeking "information about treatment and the alternatives to corticosteroid treatment of this disease" is also increasing. According to Darrell Cookman, communications coordinator for the Cornelia de Lange Syndrome Foundation in Avon, Connecticut, "New parents, relatives, friends and professionals contact the CdLS-USA Foundation each day seeking information and support."

Ellie Schlam, public relations director of the National Kidney Foundation in New York City, traces the growing demand for information to changes in the health care system: "With the cutbacks in health care, many patients are receiving less time and attention from their own physicians and are consequently looking to associations like ours to fill in the information gaps. Whereas a few years ago, we received a few hundred calls each week, we now receive more than 2,000 calls on a weekly basis and have a staff person completely dedicated to answering patient and family calls and e-mails and sending out relevant information."

Virginia T. Ladd, president and executive director of the American Autoimmune Related Diseases Association in East Detroit, Michigan, agrees. "There is much more demand for our services, especially more of a demand from persons seeking information on the web. ... people are doing their own research and not just … relying on their physician for answers."