About the man who put kids’ health on the national research agenda

Healthcare practice and medical science are dominated by the diseases many of us may acquire at some point in our lives. Not surprisingly, many of the diseases that affect children get short shrift and the underlying science often lacks adequate funding. Seldom do we escape this pseudo logic whereby rare disease research provides a poor return on investment – in other words, few cases equals low impact.

On March 9, David Frohnmayer passed away. Dave has been rightly credited for his work as Oregon State Attorney General and widely lauded for his tenure at the University of Oregon. Curiously missing from the many fitting accounts of his accomplishments was what I have always considered one of his proudest achievements: generating awareness, philanthropic commitment and National Institutes of Health (NIH) funding to understand genetic diseases in children, and in particular Fanconi Anemia.

I first had the pleasure of meeting Dave in 1999 at a scientific meeting, where he appeared to be the sole non-scientist in the room. With plenty of egos assembled, he seemed refreshingly humble, his questions almost invariably insightful. His calm and thoughtful demeanor on this and many other occasions was infectious as he was able to get people to do the same thing he did so well: listen. Dave commanded the room with sheer sincerity and reason. He always struck me as a quiet, incisive thinker and he brought people together to build sometimes surprising and often long-lasting alliances.

Over the ensuing decade and a half, he, his wife Lynn and many others, including prominent OHSU faculty, turned the spotlight on a rare genetic disease: Fanconi Anemia (FA), which affected his own family. The Fanconi Anemia Research Fund became a model of administrative thrift and philanthropic impact that others would follow. The Fund helped people understand that children with rare diseases have lessons to share – lessons that can help adults suffering from cancer.

A tireless commitment to the cause, some seed funds and Dave’s vision seemed to propel the FA community of patients, parents, doctors and scientists forward. The rewards are now readily apparent in gains in our scientific understanding of genetic diseases, FA first and foremost. Children and young adults diagnosed with FA today benefit directly and in no small measure from this legacy, as his efforts have led to improved diagnostics, therapies and the general awareness of risk factors for FA patients.

Remarkably, the larger scientific community and the NIH began to understand the powerful lessons FA could teach and they too followed with funding, which in turn attracted physicians and scientists who shared Dave’s abiding interest in helping kids suffering from rare genetic diseases.

Beyond the “cute-n-cuddly” others mistake for pediatric advocacy, Dave’s deeply rational approach and sheer grit were effective far beyond what we could have hoped for. Dave leaves many lasting contributions to Oregon, but some of us consider his work for patients with Fanconi Anemia – though it’s far from finished – his most significant legacy.

Peter Kurre, M.D.
Professor, Pediatrics | Cell, Developmental & Cancer Biology
OHSU Doernbecher Children’s Hospital

One response to “About the man who put kids’ health on the national research agenda

  1. Though I did not know Dave on a personal level
    I did consider it an honor to have met him on a few occasions at Camp Sunshine in Maine He has impacted my life and that of my family greatly
    with his Dedication and Efforts in the research of the rare disease Fanconi Anemia. Because like the Forhnmayers our family too has been effected with this rare disease. I have 2 grandchildren with FA, Alexandra and Matthew Pearl. Finding Dave and Lynn Frohnmayer and the Fanconi Anemia Research Fund was an encouragement, help and inspiration at a very scary and lost time in our
    lives. Words could Never express how much their help and their gentle touch did for us.
    David Frohnmayer leaves a HUGH VOID in this world and will be greatly missed by so many.

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