As pediatricians we care for children with a wide spectrum of illness and injury. Some of them are life-threatening, some more mundane, most heal. Children grow, parents are grateful and pediatricians thrive on the validation both provide. Only sometimes the news is that things will not get better, will last a long time and children will not grow to be their unencumbered, exuberant and irreverent selves.
Fanconi Anemia, or FA, is a rare, 1 in 180,000, illness that spells a long chronic course of office visits for the children and sleepless nights for the parents. The list of complications is long and the medical needs are daunting. It is easy to get lost in the complexity and heartbreaking to watch when lives are cut short after long suffering.
When Peg Padden’s son was diagnosed with Fanconi Anemia and subsequently passed away, she was not content to sit by. Determined to make a difference and help find cures so others would not have to go through the same agony, she organized the Valentine Fanconi Anemia Run/Walk 5K/8K/12K.
Through the years, she has found many friends and supporters that brave the inevitable drizzle and occasional cold that are the hallmarks of a February morning in Portland — more than 1000, last year. Many participants learn more about the disease as they meet other runners. Some turn out to be patients, some parents, others are doctors, nurses, medics, FA researchers, students or running enthusiasts. Altogether: COMMUNITY.
What motivates Peg to organize the run and us to join? A commitment to the patients and a strong conviction that research will eventually offer a cure and help translate biological insight to tangible benefit — bench to bedside.
OHSU has been a center of excellence for FA research for many years and researchers here have made landmark discoveries that provide a deeper understanding of the disease. OHSU Doernbecher also serves as a home for the comprehensive care that FA patients with their medically challenging situation require.
Over the past nine years, the Valentine Fanconi Anemia Run has motivated 6,500 of us to get up early on a Sunday in February, lace up and join Peg. Along the way she has raised $350,000 for Fanconi Anemia research. Pretty amazing, really!
Peter Kurre, M.D.
Associate Professor of Pediatric Hematology/Oncology
OHSU Doernbecher Children’s Hospital