By Todd Cohen
As vice president for policy, planning and communications at the Michael J. Fox Foundation for Parkinson Research , Joyce A. Oberdorf saw an opportunity to fill a gap in helping families of patients cope with the disease.
The Fox Foundation, she said, had developed an effective business model for raising money to support research to find a cure for the disease and ensure improved therapies for patients.
But the Parkinson’s community “was not all that good at systematically addressing” the impact on families from the inevitable deterioration faced by patients, who tend to live a long time with the disease, Oberdorf said.
So in March 2008, she joined the National Parkinson Foundation as president and CEO, aiming to “develop the care-and-support side for Parkinson’s in the same way that the Fox Foundation had developed the research side.”
Welcome to the competitive marketplace for healthcare charities that focus on diseases. “We’re all competing,” said George Omiros, executive vice president of campaign and field development for the Leukemia and Lymphoma Society.
The chase for charitable donations pits all charities against one another. “We compete with all charities for the charitable dollar, especially since the downturn in the economy,” Omiros explained. “Since 2008, there’s been virtually no growth in the philanthropic sector. There’s been decline.”
With all charities competing for funds, and with even closer combat among health charities that focus on the same disease, the struggle is to “steal market share from other organizations in order to continue to grow,” Omiros said.
Among cancer charities, he said, three organizations dominate the fundraising field. Those include the American Cancer Society, which raises nearly $1 billion a year, Susan G. Komen for the Cure, which raises roughly $400 million annually, and the Leukemia and Lymphoma Society, which raises $320 million.
Komen and the Leukemia and Lymphoma Society both have “taken away market share,” from the American Cancer Society, he said. Some 20 years ago, the Cancer Society was raising about $300 million a year, he said, while the LLS was raising approximately $35 million, or about 11.6 percent of what the larger organization was raising, a share that has nearly tripled to 32 percent.
Officials of the national headquarters at the American Cancer Society and Susan G. Komen for the Cure declined to be interviewed for this article. A Komen spokesman said in an email message that “the competition aspect of fundraising isn’t something they want to talk about right now.”
Underscoring the stakes involved in disease fundraising was the announcement by Komen in August that its founder was stepping down as CEO and its president had resigned. The shakeup came in the wake of a highly publicized controversy Komen had triggered when it announced it planned to end most financing for breast cancer education and screening by Planned Parenthood of America. Planned Parenthood provides family planning among its services, and some Komen executives opposed those services.
Although Komen quickly reversed its initial decision, the controversy has hurt fundraising this year at many local Komen affiliates.
In a fiercely competitive charitable marketplace, effective fundraising requires a range of strategies that include engaging and retaining volunteers and donors, building a brand, marketing, social media and, not least, differentiating the organization’s programs from those of other groups, said nonprofit leaders and fundraising professionals.
What is key, they explained, is that nonprofits must focus on their own strategies, not those of the competition.
“I don’t every recall being in a room when we were planning an event or major gift campaign where our competition entered our thinking, other than wanting to avoid what they were doing on a particular day,” said Pam Kohl, CEO of Komen North Carolina Triangle to the Coast, the Raleigh-based Komen affiliate that serves 29 counties in Eastern North Carolina.
“We focus on our mission, our niche,” explained Kohl, a former CEO of Planned Parenthood of the Capital and Coast and former executive director of the Alice Aycock Poe Center for Health Education, both based in Raleigh.
The local Komen affiliate looks at the national Komen website every week to learn from the strategies of other affiliates, she said. It also works in collaboration with groups like the American Cancer Society to push state lawmakers for more funding for breast and cervical cancer programs.
“In my 25 years, it was never about, ‘We’ve got to do it better than they do,’” she said. “Most of the time, it was about, ‘We’ve got to do it the Poe Center way or the Komen way. We’ve got a brand. We’ve got to maintain our brand and do our events better than we did it last year.’”
AIDS Lifecycle is an annual 545-mile bicycle ride from San Francisco to Los Angeles that raises money for the San Francisco AIDS Foundation and the Los Angeles Gay and Lesbian Center.
Since it was launched in 2001 as a spinoff of the California AIDS Ride, the event has raised nearly $100 million, including nearly $13 million in June.
Rather than worrying about one-upping competitors to stand out amid the clutter of fundraising events, AIDS Lifecycle focuses on giving participants the best experience they can have in raising money and staying healthy, said Greg Sroda, director of the event.
“I think it’s a competitive environment but I feel our ride and our community have something unique,” he explained.
AIDS Lifecycle works to differentiate its ride from other fundraising events, both those that support AIDS services, as well as those that support charities in other fields, by providing participants with rigorous, year-long training programs that focus on fitness, safety and fundraising.
Those include a suite of tools that range from fundraising pages, marketing workshops and coaching to fitness training.
“It is competitive about how we are going to get the dollars we need,” Sroda explained. “We put the power in participants’ hands.”
The National Parkinson Foundation tries to differentiate itself not only by its focus on helping people cope with the disease on a daily basis, but also by its effort to keep most of the money in the communities where it was raised.
“We carved out a mission that is a complementary, non-competitive mission with what the Fox Foundation does,” Oberdorf explained. “We always keep in the forefront of our minds that the true competitor is the disease,” Oberdorf said. “The true thing we’re fighting is the disease.”
Created in 1955, the foundation has raised roughly $120 million since 2000, or about $11 million to $12 million a year, plus $4 million a year through its 39 chapters throughout the U.S. The foundation has launched Moving Day, which executives hope to build into a national signature event. Piloted in 2011 in Washington, D.C., Pittsburgh, Pa., and a small town in Georgia, the event will be held in 16 communities this year and in 20 next year.
Money raised at each event is used to provide services in the local community, and the event is designed to “provide a much-needed boost to attract people to be volunteers,” Oberdorf said.
The foundation in recent years also has invested in technology “to determine what care and treatments produce the best outcomes over time,” she said. Last year, it launched a new digital application that physicians can use on smart phones or other mobile devices to identify tests they can use or to find out how to conduct an examination if they suspect a patient may have Parkinson’s. And next year it will launch a digital …app that patients can use to find out the kinds of questions they should ask their physicians if they suspect they may have the disease.
“Distinguishing ourselves is absolutely crucial in everything we do, as is making connections with families is absolutely crucial,” said Oberdorf.
The Fox Foundation for Parkinson Research, which has invested more than $300 million to fund research and last year raised $68 million, focuses entirely on finding better treatments and a cure for Parkinson’s disease.
“We are the only Parkinson foundation solely focused on funding Parkinson’s research — with the single-minded goal of developing improved treatments and a cure,” said Sheila Kelly, vice president for development for the foundation, which is based in New York City. “That has helped us continue to go back to our donor base and constituents, and report on progress.”
Engaging donors and volunteers has been a key strategy at the foundation, she said. Team Fox, the grassroots fundraising arm the foundation launched in 2006 to provide people in local communities with fundraising tools and support, has raised $16 million, including $6 million last year.
Also key are major gifts, which account for over half the foundation’s annual revenue. The family of Google co-founder Sergey Brin, for example, offered to match up to $50 million in new contributions. The foundation has matched more than $33 million so far, including $4.7 million Nike donated after raising those dollars by selling in a charity auction on eBay 1,500 pairs of Nike MAGs, the sneaker Fox wore in the movie Back to the Future Part II.
Kelly said transparency also is critical to the foundation, which has no endowment. “Whatever we bring in we put out to research,” she explained. “So we go back to people each year, so it helps to be transparent and accountable to constituents.”
At the Leukemia and Lymphoma Society, getting more volunteers involved in the organization is a key fundraising strategy, Omiros said. The organization has focused on recruiting volunteers to raise money, serve as local leaders, connect the organization to resources, and be involved in programs that serve patients.
Volunteer engagement during the past four years has grown 50 percent at the local level, and volunteer leadership in the organization’s signature “Light the Night” walk program has grown 75 percent. With more than 300 sites, Light the Night last year generated $56 million.
The Leukemia and Lymphoma Society has recruited 500,000 volunteers just to write letters to their neighbors asking for contributions and to get involved with the organization.
The Leukemia and Lymphoma Society, which has invested more than $850 million in research since it was formed in 1949, including more than $75 million last year, operates with 61 chapters in the U.S. and Canada and generates more than $300 million a year in revenue, roughly 90 percent of it from events.
It also is important for the organization to differentiate itself from other charities, particularly cancer charities, Omiros said. “We position ourselves that we are one of the top leading supporters of research in the U.S. and, besides the federal government, worldwide, in blood cancer research,” he said.
New research in recent years has targeted strategies for helping patients, such as a “therapy-acceleration” program that funds new initiatives to bring research to patients quickly. And on Jan. 23, 2013, in San Antonio, the organization will launch Herothon, a world-class endurance program featuring a half-marathon that aims to capitalize on Team in Training, an endurance training program that surpassed $1 billion since the Leukemia and Lymphoma Society launched it 24 years ago.
“I’m a firm believer that people give money to people, not necessarily to causes,” Omiros said. “So the more volunteers you have engaged, or the more people out there asking people to give money and be involved and provide patient service programs, the better we can be as an organization.”