Amy (Frohnmayer) Winn.jpg

Amy Winn, the youngest daughter of the late Dave Frohnmayer and his wife, Lynn Frohnmayer, died Sunday, Oct. 2, 2016 from complications stemming from Fanconi anemia, a rare genetic disorder. She was 29 and the third Frohnmayer daughter to die of the disease. Winn was an active runner, cross country skier who was about to finish her second master's in psychology.

(Family photo)

The youngest daughter of late University of Oregon President Dave Frohnmayer and his wife Lynn died early Sunday at age 29 from a rare genetic disorder -- the third Frohnmayer child to lose a battle with Fanconi anemia.

Amy Winn learned as a child that she had Fanconi anemia and as a result made every minute of her life count, her mother said Monday.

"She grew up believing that her life probably would be shortened because of that disease and she became extremely grateful for every single minute that she was given," Frohnmayer said.

Winn wrote poetry, enjoyed the outdoors and was an accomplished cross-country skier and runner. She completed the San Francisco Marathon and did several half marathons, while running about six miles almost every day, her mother said.

She also earned a master's degree in psychology at Stanford University and was about to complete her second master's in psychology with a focus on counseling at Oregon State University-Cascades in Bend. She recently married.

She was passionate about becoming a mental health counselor, Lynn Frohnmayer said. But her biggest contribution was her loving attitude and positive outlook.

"She was extraordinarily happy," Frohnmayer said. "She was an inspiration to every one who was lucky enough to get to know her."

Complications from Fanconi anemia killed Katie Frohnmayer in 1991 when she was 12 and took Kirsten Frohnmayer's life six years later at 24. But Winn was always healthy, Frohnmayer said. Her bone marrow was monitored regularly, showing good blood counts.

The disease, which affects about 1,000 to 2,000 people in the United States, can cause birth defects such as missing thumbs. But it can kill when the bone marrow stem cells start to fail, often leading to leukemia.

Winn's last bone marrow check was in January, nearly a year after her father died of prostate cancer at 74. Her blood counts were great, her mother said. But in May, Winn developed pains in her shoulders and lower back. She was hospitalized at St. Charles Medical Center in Bend and then taken to Oregon Health & Science University in Portland for a diagnostic workup.

She had AML or acute myelogenous leukemia, and it was aggressive.

"We really were not prepared for what happened in May," Frohmayer said. "Close to 100 percent of the cells in her bone marrow were leukemic."

Leukemia is one of the main killers of patients with Fanconi anemia, said Dr. Markus Grompe, a geneticist at OHSU who has worked on the disease for 20 years.

Fanconi anemia is associated with about 20 genetic mutations. The disease attacks the bone marrow, making it difficult to produce blood. That can lead to cells that grow too much and turn into cancer, Grompe said.

"Very few patients have a normal lifespan," Grompe said. "Either anemia or the cancer tends to cause very premature deaths."

In May, Winn went to the University of Minnesota Masonic Children's Hospital in Minneapolis, known for its treatment of Fanconi anemia.

The main one is a bone marrow transplantation. But it can be tough to find a match because a donor must be genetically similar, Grompe said.

To help patients, Dave Frohnmayer co-founded the Bone Marrow Registry in 1986. Three years later, the couple formed the Fanconi Anemia Research Fund, which has raised $35 million and become the main national support group for the disease.

Winn was active in the fund. But it couldn't help her. In Minnesota, she underwent chemotherapy. She also married her fiance, Alex Winn, 36, in her hospital room.

Winn underwent another round of chemotherapy and had a blood transplant, with her mother, husband and two brothers - Mark, 41, and Jon, 31 -- by her side for four months. Neither brother has the disease.

She did well but in mid-August had a relapse. The cancer came back as aggressive as ever.

Winn returned to Oregon where she was admitted to OHSU, which is focused on finding targeted cancer therapies.

Over the past 30 years, improvements have been made in bone marrow transplantation but no other progress made in the treatment of Fanconi anemia, Grompe said. Physicians still use oxymetholone, a synthetic anabolic steroid, to try to improve blood counts.

Grompe hopes to change that. In the lab, he and colleagues have discovered that a drug for those with diabetes, metformin, delays or prevents mice with Fanconi anemia from becoming anemic. Working with scientists in Boston, he plans to try the drug on children with the disease, thanks to a grant of nearly $10 million from the National Institutes of Health.

The trial won't start for at least a year and a half, putting a potential treatment years down the line. Though it won't help the Frohnmayers, they have helped spur research and awareness of the disease.

Service arrangements are pending.

-- Lynne Terry