By Cheryl P. Rose and Margaret Battistelli

A Funny Thing Happened... when Michael J. Fox founded an organization to eradicate Parkinson's disease. By flying in the face of convention in many ways, it became a fundraising powerhouse.

The Michael J. Fox Foundation for Parkinson's Research seems to have it all wrong.

The organization does its work from a single office in New York City. It doesn't want to branch out and establish regional offices around the country. It doesn't spend a lot of time and effort prospecting. Or trying to get donors to commit to multiyear giving. Corporate giving is minimal. It doesn't have an endowment. (Nor does it want one, since one of the organization's core beliefs is that capital raised for the purpose of curing a disease has an obligation to be spent on research today, not stockpiled for the future.)

Yet the $57 million MJFF raised last year ($50 million of which went toward its mission) tells a different story. The foundation, which has funded more than $240 million in research since its founding 10 years ago, is light on its feet and built for speed.

"The goal of the foundation is to speed therapies and ultimately cure Parkinson's , and [we] would ultimately like to put ourselves out of business," MJFF Deputy Director of Development Sheila Kelly says.

"We don't have an endowment. We don't put money in the bank to grow. This keeps us accountable to our donors because each year we have to go back to our donors and ask them to support our work again," she adds.

Call it counterintuitive. Call it flying in the face of every PowerPoint-ed highlight at every session of every fundraising conference you've ever attended. Or you could just call it successful.

MJFF's revenue stream includes very little corporate support and relatively few multiyear gifts, which means it has to stay in front of its donors, asking them continually to support the mission. It's a lean and unusual fundraising model, but you'd be hard-pressed to argue with its results. Kelly says it keeps the foundation nimble and, most importantly, honest.

"We start at zero each year, and 87 percent of what is raised is allocated [to research programs] that year," she explains. "Because of our aggressive model, [donors] understand our approach and believe strongly in accountability."

"We are highly transparent," she adds. "Our donors know exactly what we're doing with their money, and that's why we try to get in front of them as often as possible — because that's where we see the most success."

Many disease-specific organizations battle the problem of establishing relationships with donors outside of the patient/family/friends circle, but Kelly says MJFF has a number of six- and seven-figure donors who give simply because they're impressed with the organization's "purity of motive."

Simply put, MJFF is the fund raising powerhouse that it is because it's tightly focused and able to clearly state its objectives and show results — something organizations of every size and mission can aspire to and attain.

Of course, MJFF has something other organizations don't — Michael J. Fox — and you simply can't overlook the power of celebrity. The Canadian actor who rose to fame in the U.S. mainly for his role in the iconic sitcom "Family Ties" and the "Back to the Future" film franchise is undoubtedly the face of the organization.

And what a face. Fox was diagnosed with young-onset Parkinson's in 1991 at the age of 30. Since announcing his diagnosis publicly in 1998, he has gone from beloved film and TV star to international symbol of courage, persistence and hope (so much so that The Foundation for a Better Life recruited him for its Optimism campaign, using his face on a billboard with the words "Determined to Outfox Parkinson's").

Fox is the backbone of the organization, Kelly says, "but he lets us do our work."

She adds that Fox's vision lies at the core of the organization's fundraising success.

"[He believes] if you have purity of motive, are clear about what you are trying to achieve and what you are doing with people's money, they will continue to support you," she says, adding that the star is adamant about impeccable stewardship. That's why the organization isn't "big into the tchotchkes" and elaborate donor-recognition programs.

"That comes back to Michael," Kelly says. "We don't like to invest our money in that stuff. If they are an event supporter, they are listed in the event program. [There is a] full donor listing in the annual report. We're not naming conference rooms or giving awards or anything, and that seems to work."

Funding streams

Events and individual giving account for the lion's share of donations to MJFF, Kelly says. Gifts of $2,500 or more are considered major gifts. The organization thrives on its ability to get representatives out and about to meet with donors. While nonprofits are increasingly recognizing that empty desks in the office mean more money in major gifts, MJFF has always believed that relationships are built in person.

"Our associate directors of advancement travel every other week to third week, and when they aren't traveling they are planning their next trip and working on their stewardship," she explains. "The foundation has no outside offices. We are not built for longevity. Adding field offices would be building infrastructure. The team travels all over the county.

"[MJFF's major-donor cultivation] is conversation-based. Our donors are very honest with us about where they can be giving," she adds. "We are aggressive in our model but respectful in our fundraising. We may have a number in mind, but we leave that up to the donor. We really believe that our donors are giving at the highest level they can, and when they are able to give more, they will."

MJFF's fastest-growing revenue stream and the "heart and soul of the foundation," Kelly explains, is its community fundraising arm, Team Fox, which has brought in $13 million since 2006. It's made up of local fundraisers — most of whom are part of the Parkinson's community — who run marathons or host events to raise money on the foundation's behalf. For its part, MJFF provides Team Fox members with tools to facilitate their fundraising, including mentors, and information on how to ask for money, set up personal fundraising websites and organize public relations efforts — "anything we can do to assist in the planning without doing it ourselves," she says.

"Even when the economy took a hit, even though donors weren't writing big checks, they were still supporting family and friends in these smaller efforts," Kelly says. "[These events] foster a sense of community among Parkinson's patients. We have witnessed a growing community that's been just amazing."

MJFF hosts a few targeted events of its own, as well. It keeps ticket prices high ($2,500 each, for example, for its annual fall gala in New York, which draws about 900 attendees each year) and the feeling light. The "A Funny Thing Happened on the Way to Cure Parkinson's" gala is a night of comedy and music, as per Fox's direction. He believes, Kelly says, "if we are doing our job all year long, the people who are coming out know about our work and don't need to be beat over the head with scientific information."

The organization's board underwrites the cost of the event, she adds, so all the money raised — typically around $5 million a year — goes to Parkinson's research.

MJFF also hosts a golf tournament each September and a poker tournament each March. Every other year it presents a smaller version of the New York gala on the West Coast called "A Sunny Thing Happened on the Way to Cure Parkinson's."

The MJFF team currently is excited about the prospect of a recent $50 million challenge gift from two consistent, high-dollar donors. It was announced at the end of May but is retroactive to Jan. 1, 2011, and will match new, lapsed and increased giving from donors at any level. Gifts from new and lapsed donors will be matched dollar for dollar, while current donors will have their increase amounts matched.

Another area where MJFF flies in the face of convention is prospecting. The organization eschews a great deal of traditional prospect research (though it does some) and finds most of its donors through traditional relationship building, much of which starts with the highly engaged members of its board and "junior board" leadership council. It also hears from many individuals who become donors that its website was one of the first places they went looking for information about Parkinson's disease following their own diagnosis or that of a loved one.

Kelly shares the story of someone who was diagnosed with Parkinson's and so impressed with the website that he made a $50,000 gift. It was a plus for both the organization and the donor, who found a place not only to get information on his diagnosis but also the built-in support of people who could understand what he was experiencing.

Not just about fundraising

That kind of win-win thinking powers much of MJFF's supporter and community touches. Like most successful fundraising entities, the organization knows there's more to supporter relationships than simply asking for money. There's no "donor as ATM" approach here.

MJFF emphasizes the importance of letting donors and other supporters know about its progress in combating Parkinson's and how their donations play a role in that. But it's thoughtful about the tone of its quarterly newsletter and other communications devices, "because there's a fine line between patting yourself on the back and showing progress," Kelly says.

MJFF also reaches out with a social-media presence on sites like Twitter and Facebook, blogs, "hot topics" phone calls where supporters can call in to ask questions and hear MJFF researchers speak, and small, in-person roundtable discussions.

The organization also provides speakers for support groups, is enrolling people from around the country in an initiative to study biomarkers for Parkinson's disease, and hosts a patient council and a new project called the Fox Trial Finder that allows people to find and sign up for clinical trials in Parkinson's disease. (Non-patients can sign up to be control subjects.)

These are all ways in which MJFF keeps in touch with donors and other supporters, engages the Parkinson's community in general, and engenders relationships across the board.

Looking ahead

Despite the fact that many foundations and other nonprofits have struggled recently, Kelly says, MJFF has been able to consistently increase revenue year over year and has even seen an uptick in planned giving and estate gifts over the past few years. With its inarguable success, the organization doesn't seem like it should be looking to change things up any time soon. But it's not resting on its laurels.

"There are an estimated 1 million people in the U.S. [with Parkinson's disease], and we don't even know half of them," she says. "Our goal is to get to know more people — spreading our message and increasing our presence in other communities.

"We are never satisfied," Kelly adds. "We are always trying to improve on what we are doing."

Words of Wisdom

From Sheila Kelly, deputy director of development, Michael J. Fox Foundation

"[MJFF co-founder] Debi Brooks has said it, and I've heard her say it many times... you just want to make sure that you remain focused, that you start with a goal in mind, and though you have distractions you stay true to that goal and stay transparent to your donors and constantly challenge yourself.

"We've found success is giving people a seat at the table -- a patient council, Team Fox. Any time you can give a supporter the feeling that they have a voice, that they have an impact -- it usually means only good things as well."