Going into the America’s Giving Challenge charity fundraising competition, University President Dave Frohnmayer admits he didn’t know what to expect.
The Fanconi Anemia Research Fund, a Eugene-based organization founded by Frohnmayer and his wife Lynn to research the disorder that has claimed the lives of two of his daughters, was up against more than 700 charities that included some much bigger names, he said.
But that didn’t stop them from trying.
“We, just like everyone else, talked to friends and got them interested,” Frohnmayer said. “This is the kind of thing where you’re almost reluctant to ask for help.”
Their efforts paid off. Last week’s final results confirmed the foundation, led by Portland resident Peggy Padden, secured donations from nearly 3,000 different people. That earned it one of four $50,000 prizes nationally. Combined with the more than $65,000 the group raised during the competition – more than any other organization in the two-month contest – the Fanconi Anemia Research Fund ended up with more than $115,000 altogether.
“We were thrilled,” Frohnmayer said. “This has been a small group of very dedicated people whose families are affected by this awful disorder. And to see how the families could band together and widen the circle of friends … was really very heartwarming.”
The struggle
Fanconi anemia is a genetic disorder that often leads to bone marrow failure or other complications. It is currently linked to at least 13 known genes. If both parents carry a defect in the same Fanconi anemia gene, each of their children holds a 25 percent chance of inheriting Fanconi anemia. But for Dave and Lynn Frohnmayer, the odds were much worse than that.
Related Links
- The contest results</</li>
Three of their five children inherited the disease, which included all three daughters. Two of them, Kirsten and Katie, have since died from Fanconi anemia-related complications. The third, Amy, a junior at Stanford University, still carries the disease.
“She’s currently stable, but obviously we watch her – she and we watch her like a hawk in terms of looking for any scientific signs,” Dave Frohnmayer said.
When the family was first diagnosed in 1983, Frohnmayer said they didn’t know what to do. Little was known about the disorder, and most treatments available carried a high risk of potentially fatal complications.
“You feel isolated, alone, overwhelmed, don’t know where to turn,” Frohnmayer said. “It was really an orphan disease then.”
With local scientists and doctors struggling to find answers just as his family was, Frohnmayer and his wife decided to take matters into their own hands. They jointly founded the Fanconi Anemia Research Fund in 1989. The organization has since spent more than $10 million on research for the disease, he said.
“You have basically two choices when you face a challenge like this: You can either be a victim yourself, or you can try to fight back with all of the resources at your disposal,” Frohnmayer said.
The research
Since the founding of the Fanconi Anemia Research Fund nearly 20 years ago, scientists have made huge gains in learning more about the disease, said Mary Ellen Eiler, the organization’s executive director.
Each of the 13 genes currently linked to the disorder has been researched and cloned. In 2002, one of those genes was also directly linked to breast cancer, Eiler said.
“For a rare disease, it’s become a disease that has a lot of importance,” she said. “It turns out that we affect millions.”
Researchers have been able to key in on certain parts of the disorder to develop better treatments, Eiler said. While most Fanconi anemia patients eventually need bone marrow transplants to stay alive, 20 years ago an exact match from a relative was needed for any chance of survival. Today, that’s no longer the case – relative transplants now offer a 100 percent success rate, and mismatched donors give the patient about a 65 to 70 percent survival rate, Eiler said.
But as Fanconi anemia patients have been able to live longer in recent years, new complications have presented themselves as a result, Eiler said. People with the disorder often develop leukemia as a result of the disorder, or various forms of cancer because their cells are not able to regenerate and repair as a healthy person’s would.
“Those are puzzles that need to be unlocked if the cancer problem is going to be addressed more completely,” Frohnmayer said. “The association of Fanconi anemia and cancer has always been very important scientific form of inquiry, and now it’s become even more prominent.”
Until those discoveries are made, Eiler said the Fanconi Anemia Research Fund is working to unite both the victims of the disorder and the researchers. The organization hosts camps for families affected by the disease, and annual scientific symposiums allow researchers to discuss their findings face-to-face, she said.
“It’s so rare, it really helps for them to be able to talk to other Fanconi anemia researchers,” Eiler said.
Finding support
For a disease that only affects an estimated 300 to 350 people nationwide – and only a handful in Oregon – Frohnmayer said he’s been amazed at the support he’s found both before and during this year’s fundraising competition.
And that’s exactly what the goal of the event was, said Christie Emden, vice president of communications with Parade magazine, which sponsored the event jointly with The Case Foundation. By keeping track of individual donors instead of total funds raised, charities were inspired to raise larger donor bases and get more people involved, she said.
This year’s inaugural America’s Giving Challenge raised a total of $1.2 million for the groups involved, and plans are in the works to do it again next year, Emden said.
“We’re delighted with the response,” she said. “We’re very pleased. We consider it a very big success.”
Padden, who entered the Fanconi Anemia Research Fund in the competition, said she was shocked at the amount of donations the group secured. And they entered late – the contest began on Dec. 13, but Padden didn’t start the effort until January, giving her less than a month before the competition ended Jan. 31.
“All along I thought, ‘If somebody else doesn’t do this, I am definitely going to,’” she said.
Padden has also been affected by Fanconi anemia, losing one of her three sons to the disease. Another still has the condition, she said.
Though Padden initiated the effort, she gave credit to the people who came through for her during the fundraiser.
“It was phenomenal teamwork and incredible generosity,” she said. “I started it, but everybody else kept it going.”
Frohnmayer said he was very gratified for the support his own organization saw and hopes to build off that success to facilitate further research.
“I think it’s a great boost because it heightens the visibility of the fund, and it broadens our reach of donors,” he said. “It’s basically been a really grassroots effort anyway with a tremendous effort in the state of Oregon – our major donor base is in Oregon. But increasingly, families outside of Oregon have stepped up.”
And while huge gains have been made, there’s plenty more to be done, Frohnmayer said. From a relatively unknown disease in the early 1980s, Fanconi anemia has since become a more visible disorder that has broad implications in other parts of science and medicine.
But Frohnmayer said he hopes it’s only the beginning of what leads to more practical applications later on.
“Our bets are still on science, and the problem is we still need therapies,” he said. “There’s a lot of basic science that’s very interesting, but it might be a generation away from doing something.”
eflorip@dailyemer
ald.com