Health nonprofits make up a vital link in the growing world of healthcare. By disseminating information, they raise public awareness about debilitating diseases, raise funds to support scientific research, and support today’s patients. LN spoke with representatives from a few local health organizations to learn how they work and how they are funded.
“St. Louis Ovarian Cancer Awareness is committed to impacting ovarian cancer survivorship by promoting awareness about early warning signs, enabling early diagnosis and promoting ovarian cancer research and survivor support,” says president Grace Katzenberger of the six-year-old group. Funded by donations, SLOCA’s vision is a society where early detection and increased research improve survival rates.
Ovarian cancer is the deadliest of the gynecologic cancers and ranks fifth in cancer deaths among women. No reliable test exists for ovarian cancer, making information and knowledge about symptoms critical. “We give out literature on the signs to look for bloating, pelvic or abdominal pain or discomfort, unexpected weight gain or loss, and ongoing fatigue,” Katzenberger reports.
“The challenge we have faced is raising money. We survive on our fund-raising,” she says. “Our next fund-raiser is the Fling Fashion Show on April 13, taking place at Andre’s on Telegraph Road. People interested in the fashion show and luncheon can call 894-3024. “We intend to remain an organization until they come up with a test that detects ovarian cancer before it’s in the advanced stages. After that, we’d just as soon go out of business,” Katzenberger says.
Beth Norveil of the St. Louis chapter of the National Multiple Sclerosis Society says keeping a nonprofit going takes vigilance on every front. “On a daily basis, we face the challenge of how to maximize our resources both financially, from a staffing perspective, and on a volunteer level,” she says. “How can we meet the needs of everyone in our area living with MS to the fullest of our abilities? The challenge comes in raising dollars.”
The Society provides programs and services for people with MS and their families, including educational and research programming, health help groups and financial assistance. It also holds major fund-raising events throughout the year, including Walk MS and biking events. “People solicit donations from friends and families and form teams. We also have private donations. Grants provide for some of our programming, but most of our budget comes from our fund-raising,” says Norveil. “May 30 through June 1 is a three-day, 15-mile walk throughout St. Louis. Our Bike MS event happens this year on Sept. 6 and 7.”
Norveil says there is exciting research going on in the MS world. “We’re fortunate we have lots of trials locally,” she adds, pointing to research taking place on the pregnancy hormone Estriol. “Women with MS have a reduction in symptoms during that time. Everyone’s pretty excited to see what comes of it,” she says.
Anne Carpenter, division director of programs at the St. Louis chapter of the National Kidney Foundation, says, “Our charity provides financial assistance and nutritional supplements for our patients. We also provide screenings for kidney disease, and for medical professionals, we offer continuing education seminars. We offer our newly diagnosed patients and family members educational materials on the disease and nutrition.” Once a person has been diagnosed with kidney disease they must maintain a very strict diet. “We also provide research grants and equipment grants to nonprofit dialysis units,” Carpenter adds.
Like SLOCA and the MS Society, The Kidney Foundation is largely financed through its fund-raising events. It also has a car donation program and receives individual donations, United Way funds and grants from foundations. “Our challenge is to get the word out to the general public. Kidney disease is devastating and in most cases it can be prevented,” Carpenter states. “For example, if you have diabetes, you should maintain your blood sugars, or if you are hypertensive, you need to maintain your blood pressure. We need to get the word out that one in nine people is at risk for developing it, and in most cases, it is preventable.”
The Kidney Foundation is sponsoring the Kidney Classic golf tournament on Monday, April 21, at Whitmoor Country Club, Carpenter says. “We are also partnering with our local constituents a group of nurses, social workers and dietitians to look at which programs we need to add and what we could enhance. We are also looking at collective partnerships with other nonprofits and more easily accessible electronic information.”