Rare Disease Report

3rd Frohnmayer Daughter Dies at Age 29. Inspiration for the Fanconi Anemia Research Fund

OCTOBER 06, 2016
James Radke, PhD
Amy Frohnmayer Winn is the 3rd sister in the  Frohnmayer family to pass away. She was 29 years old. All three daughters of the late Frohnmayer, former president of University of Oregon, had fanconi anemia.
 
The disease, which affects about 1,000 to 2,000 people in the United States. Patients with this rare hematologic condition seem to be at higher risk for blood cancers and that was the case with Amy. She had an aggressive form of acute myelogenous leukemia (AML).

Prior to the cancer diagnosis, Amy was an avid runner and was completing her second Master’s degree in Psychology at the Oregon State University-Cascades in Bend, Oregon.
 
Amy was also very active in the non-profit organization that her family created, the Fanconi Anemia Research Fund, which has raised $35 million for the disease.

FaceBook video goes viral

Recently, Amy’s brother, Mark Frohnmayer posted a video of Amy in the hospital with the text

After a months-long valiant struggle, my dear sister Amy Winn succumbed to complications from leukemia early this morning. She was surrounded by her loving family when she passed and spent the last days of her life in the company of adoring friends and relatives.

A couple weeks ago, Amy and I filmed a last-ditch video plea to pharmaceutical executives for drugs we thought might save her life, and though her particularly vicious brand of AML took her before that effort could bear fruit, her words excerpted here so clearly summarized her boundless compassion for the beings with whom she shared this life, her unflagging determination, and the poetry of her soul.

I'll never forget you Amy; sister, teacher, and friend beyond compare.

 
That video is below.


Fanconi Anemia

Fanconi anemia (FA) is an inherited anemia that usually  leads to bone marrow failure (aplastic anemia). It is primarily a recessive disorder. Clinically, hematological abnormalities are the most serious symptoms in FA. By the age of 40, 98% of FA patients will have developed some type of hematological abnormality. 

The current median lifespan for a patient with FA is 33 years.

Many patients eventually develop acute myeloid leukemia (AML) or other cancers. 

 


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