February 2001

Special Challenges—Posed by the Diseases 

Nonprofits engaged in the fight against disease face the same challenges as organizations in the rest of the independent sector. Brian Fitzek, associate director of communications for the American Lung Association of Maryland, describes the shared obstacles:

Receiving support of time and money is more challenging today than a decade ago. Volunteers are no longer housewives, but rather college students and young people who work full-time. ... Also, donor bases are changing with a significant amount of financial support coming from businesses rather than individuals. In addition, there are more organizations competing for that support.

... While the amount of money donated in this country has increased, the number of organizations seeking it has increased faster. In the last two decades, the nonprofit sector has grown by 60%. The nature of giving, where it comes from and where it goes, is evolving swiftly and in ways non-profits are just beginning to understand. The younger donors often hold new ideas about how their money should be spent.

Organizations dedicated to fighting disease also encounter difficulties arising from the very nature of their work. Shari Fulton reports that "getting the help we need" is a problem for the P.R.Y.S. Foundation. "With everyone having PPS, you cannot always depend on PPSer's energy levels to carry out tasks. We are completely run by volunteers and have only one well person on our Executive Board."

Geography presents a challenge for the Lowe Syndrome Assocation in West Lafayette, Indiana. Explains director of public and scientific affairs Kaye McSpadden, "The hardest part about running our organization has been dealing with the challenge of being 'few and far between.' Because Lowe syndrome is a rare condition, the members of our organization are spread out all over the United States and over a dozen other countries. For instance, there are ten members of our Board of Directors, and they are from ten different states!"

The American Lung Association of Mississippi must try to overcome public opinion to gain support for its clients. Elizabeth Barber, the organization's executive director, notes, "People do not find much help or sympathy when they have tobacco related illnesses."

For Janie Weyl, president of the Breast Cancer Alliance in Greenwich, Connecticut, "the hardest part of our mission is educating women on the importance of early detection through breast self examination and mammograms. To make early detection of breast cancer accessible to every woman, the Alliance underwrites mammograms for underinsured women. It is frustrating when these services go unused."

Danny Chun, director of media relations for the Alzheimer's Association in Chicago, Illinois, states that he and his colleagues "are in a race against time and have a great sense of urgency because of the looming epidemic of Alzheimer's (going from 4 million Americans with Alzheimer's to 14 million by 2050). We must increase public awareness of Alzheimer's disease as a major public health issue and raise concern about the disease and the magnitude of its impact on individuals, families and societies around the globe."

ALS Association president Michael Havlicek feels the same pressure. "There is always the challenge of the urgency associated with a fatal disease. Nothing can ever be accomplished fast enough and nothing but the ultimate elimination of the disease is enough." Rebecca Moore, executive director of the ALS Association's Evergreen Chapter in Bellevue, Washington, agrees:

Many ALS patients and their families would like to see research results sooner than they do. With amyotrophic lateral sclerosis there is no known cause or cure and patients normally do not survive past 2-5 years after their diagnosis. This places real urgency for wanting to see advancements towards treatments for ALS.