Angela Bedoya doesn’t have the fondest memories of the City of Lakes. Last time the Michigan native spent time in Minneapolis, she was 18, bald, and being derailed from starting classes at her dream college. The reasons: Fanconi anemia and a tough double umbilical cord blood transplant to treat it.

Bedoya was diagnosed with Fanconi anemia, a rare, inherited disease that eventually leads to bone marrow failure, when she was 5 years old. Bone marrow produces new blood cells for the body; without a replenishing supply of red blood cells, white blood cells, and platelets, the body cannot function normally—which can lead to cancer, organ failure, or other serious health problems. 

“My pediatrician actually said to my mom, ‘Don’t you wish she had leukemia? At least we know something about that,’” Bedoya says. “There just wasn’t a lot of knowledge about Fanconi anemia at the time. And it was basically a death sentence.”

Bedoya’s parents sheltered her from most information about her disease during her childhood, which was generally healthy and like most others’, except for the regular blood tests and bone marrow biopsies to make sure the disease wasn’t progressing.

But the family knew that Angela would one day need a blood or marrow transplant (BMT). That time came during her senior year of high school.

“My doctors basically said, ‘We don’t want to touch you. We recommend John Wagner at the University of Minnesota,’” she recalls. So she and her family headed west to find Wagner, an internationally recognized leader in BMT and holder of the Hageboeck Family/Children’s Cancer Research Fund Chair in Childhood Cancer Research and McKnight Presidential Chair in Hematology and Oncology. 

History of success

The Bedoyas felt like they were in good hands—and rightly so. The newly named Kidz1stFund Comprehensive Fanconi Anemia Center at the University of Minnesota (see related story below), now under the direction of Wagner’s colleague and fellow Masonic Cancer Center member Margaret MacMillan, M.D., M.Sc., has treated the most Fanconi anemia patients with BMTs of any center in North America.

The program’s experience, innovative research, and leading-edge techniques have given hope to families around the world—including Bedoya’s.

When she was diagnosed with Fanconi anemia in 1998, long-term survival rates after BMT for kids was less than 30 percent. Today at University of Minnesota Masonic Children’s Hospital, it’s better than 90 percent, thanks to five decades of BMT research at the U, starting with the world’s first successful bone marrow transplant in 1968.

Still, MacMillan and her team know they can do better. BMT remains a gruelling process, and these fragile Fanconi anemia patients routinely face life-threatening infections and other complications.

While transplant remains the standard of care and best hope for kids who have Fanconi anemia today, the U team is working to improve transplant outcomes and is also conducting research aimed at correcting the defective gene that causes Fanconi anemia, which would eliminate the need for a BMT altogether.

“Time is never on our side for children with Fanconi anemia,” MacMillan says. “With the help of Kidz1stFund, we are getting research done faster. We are making a difference in changing the practice of medicine, not only for people with Fanconi anemia but for those with other life-threatening conditions that aren’t so rare.” 

Patient-turned-researcher

After her own transplant experience and having met so many other kids who struggled through the harsh effects of BMT, Bedoya developed an interest in biomedical engineering. “I had always liked math and science from the time that I was young,” she says. “After going through all of that, I wanted to go into something where I could help those kids.”

So the hospital staff set up a chance for her to tour Wagner’s Masonic Cancer Center lab. “I thought, ‘This is so cool! They’re doing transplants on zebrafish! Maybe I want to do this someday.’”

That day has arrived. On July 1—the eighth anniversary of her lifesaving BMT—Bedoya moved into an apartment in the Twin Cities, ready to begin a Ph.D. program in microbiology, immunology, and cancer biology at the University of Minnesota.

“I [had] not spent my transplant birthday in Minneapolis,” she says. “It’s an extremely emotional experience coming back. It’s such a different frame of mind at this point than it was eight years ago. Eight years ago, I was just like, I want to be alive. This year, it’s like, I want to do something. I want to be part of the transformative medical research here at the U, as both a patient and a researcher, to provide hope for future patients and their families.”

The University “rolled out the red carpet,” she says, offering her financial support to pursue her education through the four-year 3M Science and Technology Graduate Fellowship and Medical School Distinguished Graduate Fellowship.

And once again, she feels like she’s where she’s meant to be.

To learn how your gift can make a difference in Fanconi anemia or blood and marrow transplant research, contact Jonna Schnettler of the University of Minnesota Foundation at jschnett@umn.edu or 612-624-5588.