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Touting research successes ties stewardship to donors.

Roughly $115 million poured into ALS Association by way of ice-filled buckets two summers ago. The association spent the latter part of this year updating supporters on the research successes made possible by their support.

ALS Association leaders have tried to be very strategic in their use of Ice Bucket Challenge dollars, according to Barbara Newhouse, president and CEO. Funding has included $10 million in 2014 to ALS Act, an initiative aimed to accelerate treatment and clinical trials and $2.5 million to the New York Genome Project-a gift that was matched by both the state and Tow Foundation.

The discovery of NEK1, among the most common genes associated with the neurodegenerative disease, was the association's biggest news of the summer. Donors were sent an email trumpeting it. There was also plenty of media coverage. Donors responded to the stewardship effort with four- and five-figure gifts, Newhouse said, with repeat gifts flowing in. Exact financial information is not yet available.

Research-specific stewardship is much more personal nowadays, said Maryrose Franko, Ph.D., executive director of the Health Research Alliance in Research Triangle Park, N.C. Many organizations host primary stakeholders at research meetings. Scientists in the field will convene and discuss their research in lay terms, sharing breakthroughs. Finding scientists who are able to share their work in lay terms and in engaging ways is a challenge, Franko admitted, but one that can have valuable effects. "The passion is much more inspirational to your stakeholder coming from the scientists," Franko said. "Donors and investors will get a peek behind the curtain."

The Ice Bucket Challenge led to spruced-up stewardship efforts at the Washington, D.C. -based association, particularly in transparency. "It was because of the ALS community and our donors through the Ice Bucket Challenge that we decided that we needed to revamp our entire website," Newhouse said. Today, each of ALS Association's 150 research projects are listed on its website along with information on how much money each has received, who received it and progress statements. If a research project closes out, information is shared on how or why it was or was not successful.

Using research success to steward past gifts is not mutually exclusive of endeavoring to secure future support. The cost to bring a research drug from "bench to bedside" is between $1.5 and $2 billion, according to Newhouse. While the Ice Bucket Challenge was valuable in bringing dollars in, awareness was equally important. "For the two-year anniversary, we're focused on progress," she said. "We plan to email donors impact statements. What we're doing is remaining very focused on what dollars have done and we believe, by remaining focused on what the dollars have done, it will encourage people to make additional gifts."

The link between stewardship and solicitation is common in the research space, according to Franko. The alliance is made up of 74 members, 50 charities and 24 foundations, in the biomedical research field and tracks both best and innovative practices. Alliance members have also sought to become more personalized in electronic communications. Deducing that supporters might not want frequent emails on a wide array of research topics, some organizations have put donors in the driver's seat and let them control about which they want to learn more.

The American Cancer Society (ACS) gives donors the opportunity to refine the information they receive to a specific topic, such as pediatric cancer, Franko said. The organization does this by both automatically tailoring research alerts for donors providing restricted gifts and operating a portal in which donors can choose for themselves. "They have to do a lot of work to make it feel like they're a boutique nonprofit," Franko said of large organizations like ACS.

Sharon Byers, ACS's chief development and marketing officer, explained that the essence of ACS is to fund early career scientists, believing it to be both a strong area in which to foster new and promising ideas and a compelling cause for donors. A portion of donors will seek to give to specific areas, such as research behind a specific cancer or brick-and-mortar projects such as Hope Lodges, which provide free housing to patients who need to travel away from their homes to seek treatment. However, that tends to be the exception as opposed to the norm.

"Most of the time, whether it's a $45 donation to $10 million, mostly they rely on American Cancer Society to prioritize where those dollars go," Byers said. Just about all, 99 percent, of ACS's fundraising is from public support, the vast majority of it in the form of community volunteer movements such as Relay for Life or charity golf outings. ACS's commitment to doubling its research budget to $240 million by 2021 has driven support around research, she said.

Piece-by-piece research is appreciated, according to Byers, but Atlanta, Ga.-headquartered ACS tries to take a long-view, foundational support with its research. Two such examples are:

* Funding the work of Brian Druker, M.D., director, Knight Cancer Institute at Oregon Health & Science University, on Gleevac, an anti-cancer drug targeting leukemia; and,

* The foundational work on Herceptin, a breast-cancer drug, by Dennis Slamon, M.D., Ph.D., director of Clinical/Translational Research, and director of the Revlon/UCLA Women's Cancer Research Program at UCLA's Jonsson Comprehensive Cancer Center.

Byers said that touting successful work, along with the 47 Nobel Prize winners ACS has funded over the years, naturally lend to continued support. The work continues focusing on making sure successes are communicated to donor bases. "When anyone gives money to any nonprofit, and we take this very seriously at American Cancer Society, they want to talk about impact," Byers said. "What we've learned is consumer behavior is when they know their money is going to a broader impact and see and hear about it, the repeat ability to give to us is high."

The primary goal for the Alzheimer's Association, another group praised by Franko, is staying connected, according to Donna McCullough, chief development officer. Research donors of Chicago-based Alzheimer's Association tend to be individual major-gift donors. Making them feel in the loop can take many forms. At the most foundational level, development staff works very closely with medical and scientific staff. Their job Is to translate what Is going on in the scientific community Into layman's terms for donors.

Beyond the basics, donor relations and stewardship can take the form of e-blast emails, surveys regarding special Interests, and one-on-one visits. Higher-level donors might also receive magazines and newsletters detailing research progress or impact reports illustrating how their contributions are making a difference. Top donors are offered specialized emersions with scientists each year at the Alzheimer's Association International Conference, the largest annual gathering of research in the field attended by about 5,000 scientists.

Moving from stewardship to solicitation is keyed by emphasizing that future progress is only possible with donors' Investment, McCullough said. Communicating opportunities for the future, which is done with the help of development staff's relationship with scientists, is often a compelling transition from stewardship to increased support for association donors. Key Initiatives currently on deck Include:

* A prevention study seeking to engage participants ages 50 and up, younger than any such study before it;

* Part the Cloud, a fundraising effort aimed to expedite the progress of laboratory successes to clinical trials. Four studies were chosen this year, each receiving $1 million, according to McCullough. The group with the most progress after two years will receive an additional $3 million; and,

* The Zenith Society comprised of $1 -million donors. Each year the association presents these highest-level donors with peer-reviewed research and society members collectively decide what they are Interested in fundraising.

"They feel like they have a stake in it when we do that," McCullough said of placing donors in the driver's seat. "Some people will give us an outright gift, but some people really care what the research is and that's what excites them."

HIV/AIDS research organization amfAR, too, balances a number of donor groups. amfAR has built a model around the narrow focus of finding a cure, according to Kevin Robert Frost, CEO. The organization has helped lead efforts toward a vaccine and to prevent mother-child transmissions. The enduring theme has been to "build the science around cure," he said.

Organizational messaging has been in-line with those goals. In Frost's 10 years at the helm, he has endeavored to move away from the fear-based, "what-if" type messaging long associated with many HIV/AIDS organizations. amfAR Instead focuses on positive, personal messaging on what can be done moving forward. One person with HIV Is a tragedy, Frost said; millions are a statistic. Remaining personal and uplifting In messaging has been where the organization has found most success.

Research successes for New York City-based amfAR are broken into two categories; those that are enduring and those that are not. A scientist working on an amfAR grant 20 years ago defined the mechanism In which HIV Infects the human cell. The breakthrough continues to Inform much of the research done today and Is used as a message as why amfAR leaders remain optimistic.

The Mississippi Baby case, a child who was believed to have been cured of HIV only to have it resurface a year or so later, is an example of a non-enduring breakthrough. The case drove a lot of discussion and much can be learned from non-enduring cases, Frost said.

The situation had to be handled deftly with donors when the results turned out not to be all amfAR leaders hoped. "We try to look at these breakthroughs as best we can," Frost said. "We don't have any crystal balls, but we try to look Into the future."

A diversified fundraising portfolio varies how amfAR uses scientific developments to steward past gifts and solicit future ones. The organization leans on major-gifts and direct-response programs, but about half of all giving comes from eight to 10 events scattered throughout the year and another 15 percent comes from government contracts.

Communicating with individual donors and seeking government contracts is more detail and results driven, Frost said. They want to see where grants are going and what means the organization is pursuing toward a cure. Events are less information-intensive, but offer different challenges such as the need to create uplifting, hope-focused messaging. "All it really does is open the door for you," Frost said of events.

Where opportunity lies in events is in attracting spectators--those who might attend an event for any number of causes--to become fans, those that care deeply about amfAR's work. "The opportunity our events create for us is to convert spectators to fans," Frost said. "We see a lot of opportunities and evidence that this happening -that our messaging is converting spectators to fans. That is one of the ways we measure success."

Caption: Model Heidi Klum, singer Jason Derulo and designer Kenneth Cole, amfAR's chairman of the board, gather during the organization's Inspiration Gala Los Angeles on Oct. 27.
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Title Annotation:SCIENCE
Author:Segedin, Andy
Publication:The Non-profit Times
Date:Dec 1, 2016
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