Runners and walkers are invited to sign up for the 10th annual Valentine Fanconi Anemia Run/Walk, held Feb. 9, 2014 at 8 a.m. in downtown Portland. The event, which offers scenic 5k, 8k and 12k routes along the waterfront, benefits the nonprofit, Eugene-based Fanconi Anemia Research Fund. FARF is working to find a cure for Fanconi anemia, a genetic and life-threatening disease that leads to bone marrow failure and cancers in children and young adults.
Longtime volunteer and participant Rachel Altmann will be one of hundreds who rise early Feb. 9 to take part. When Altmann’s daughter Nina was born in 2003, it was clear she had a variety of medical issues. But it wasn’t until Nina was almost 2 years old that she was diagnosed with FA.
“We were in shock. We had never heard of Fanconi anemia,” says Altmann of Reed in southeast Portland. “The geneticist that diagnosed Nina immediately connected us with FARF. They asked me if I wanted to talk to another person affected by the disease. A few days later, I was on the phone to Peggy Padden.”
Padden’s oldest son, Jake, passed away from Fanconi anemia in October 2003. Her youngest son Spencer is also affected by the disease. Padden started the Valentine Fanconi Anemia Run in 2005. The race, which gives 100 percent of money raised to FARF, was named February’s best race by RunOregon this year.
“A year after Nina’s diagnosis, my son and I volunteered at the run,” says Altmann. “It was the first thing we did to give back. It felt so good to do something. To look around and see all these people, coming out to support this rare disease – it was amazing.”
Nina passed away in 2006. She was 3 and a half. This will be the eighth year Altmann and her son Benjamin, 17, will volunteer, then run in honor of Nina.
“Some people come because they have a connection to Fanconi anemia,” says Altmann. “But most are just runners, and in the process of coming they learn about FA, sign up for the bone marrow registry, and help raise awareness of this terrible disease.”
“FA research has already improved treatments, so we are hopeful that continued research can eventually find a cure,” says Padden, a teacher in the Evergreen School District and a longtime resident of Irvington.
Visit www.valentinerunportland.com to register for this year’s race. Cost is $30 per adult, $15 per child for individuals who register online before Feb. 6. Groups of four adults who register together before that date get a discounted rate of $27 each. Participants can also register the morning of the race for $35 per adult, $20 per child. Prizes will be awarded to the top three male and female finishers, the top finisher in each age group and people with the best costumes. Participants can join the National Bone Marrow Registry, through a simple cheek swab test, if they wish.
Fanconi Anemia is an inherited anemia that leads to bone marrow failure. It is a recessive disorder: if both parents carry a defect in the same FA gene, each of their children has a 25 percent chance of inheriting the defective gene from both parents. When this happens, the child will have FA. The average life expectancy for a patient with FA is 33 years, although there are now patients living into their 30s, 40s and 50s thanks to continued research. Visit www.fanconi.org to learn more about the disease and the Fanconi Anemia Research Fund.