As the father of two young women and a longtime admirer of former University of Oregon President Dave Frohnmayer and the entire Frohnmayer family, I was deeply saddened to learn of the passing of Amy Frohnmayer.
Amy was the third of Dave and Lynn Frohnmayer’s daughters to succumb to Fanconi anemia, a rare genetic disorder. Amy’s life serves as yet another reminder of why we must continue to advocate for patients with chronic diseases and focus resources toward cures.
(Scott Bruun, Executive Director Chronic Disease Coalition)The Oregonian reported:
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.
According to MedlinePlus, Fanconi anemia is a disease passed down through families (inherited) that mainly affects the bone marrow. It results in decreased production of all types of blood cells. Fanconi anemia is different from Fanconi syndrome, a rare kidney disorder.
The Oregonian also reported:
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 fiancé, 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.