Proceeds to go toward funding for amyloidosis research
By Ashley M. Casey
Associate Editor
Brush up on your double Windsor knots: Fit to Be Tied is back for a fourth year.
The annual race, made up of a 5K run and 3K walk, honors late Liverpool resident Bob Palmer and raises money to research amyloidosis, the illness that killed Palmer in 2015. This year’s Fit to Be Tied race takes place Sunday, May 19, at Willow Bay in Onondaga Lake Park (see sidebar for registration details).
Bob Palmer’s family started Fit to Be Tied in 2016, marrying his love of running with his generous spirit. The proceeds from the race go to the Amyloidosis Center at Boston University School of Medicine and Boston Medical Center, where Bob was treated.
“We’ve raised $20,000 in three years for medical research,” said Floris Palmer, Bob’s wife. “They seem to really appreciate it.”
This year, Fit to Be Tied is officially a 501(c)3 charitable organization, which allows people to make tax-deductible donations. Fit to Be Tied now has a 10-member board that meets about six times a year.
“It really was an eye-opener how much stuff you have to organize — with the lawyer, with the IRS — to become a charitable organization,” Floris said.
Bob Palmer was a school psychologist in the Liverpool and North Syracuse school districts who was an avid marathoner and cyclist. Willow Bay, the site of the race, was one of Bob’s favorite places. Bob spent about two hours a day biking in Onondaga Lake Park. He continued cycling even after receiving a diagnosis of light chain amyloidosis (AL), the most common type of amyloidosis. The plasma cells in an amyloidosis sufferer’s bone marrow produce abnormal antibodies that fold themselves incorrectly and build up along the nerves, organs and tissues.
“We want to raise awareness of amyloidosis. It’s very under-diagnosed,” Floris said.
Floris said she is a member of a Facebook group for people who have lost someone to amyloidosis.
“The most common thing people say when they join is ‘My loved one was diagnosed too late,’” she said. “We were lucky. My husband was diagnosed really quickly from when he first started showing signs, and he was treated quickly but unfortunately it didn’t work.”
While Bob received the “gold standard” of amyloidosis treatment — a stem-cell transplant and chemotherapy — the disease progressed, and he died Oct. 30, 2015, at age 65.
The race also celebrates Bob’s penchant for colorful, zany ties, which he wore daily to make his students laugh. Race organizers hang ties on the trees at Willow Bay, and runners and walkers are encouraged to don their most outlandish neckwear. Prizes are awarded to those wearing the craziest ties.
“The infusion group from Crouse Hospital … they have won the group crazy tie contest three years in a row. We’re hoping some other groups will compete,” Floris said.
In addition to raising money for research and spreading awareness, Fit to Be Tied aims to bring together those affected by amyloidosis.
“Last year we got four families together that didn’t know each other before,” Floris said. “They even brought their T-shirts that they had designed from other events.”
The closest amyloidosis support group is in Rochester, Floris said.
“We would love to get a survivor group going or a support group for families who have been touched by amyloidosis,” she said. “It’s hard because it’s a rare disease.”
According to the Amyloidosis Foundation, between 3,000 and 5,000 cases of AL amyloidosis are diagnosed each year. About two-thirds of patients are male and the disease is typically diagnosed between the ages of 50 and 80. On average, people with AL amyloidosis live for a year past diagnosis, while those with hereditary amyloidosis may live up to 15 years after diagnosis.
“People are learning to live with it. … There are people locally that have beaten it but you never get rid of it,” Floris said. “They are doing exciting research. The first thing is having people live longer and be comfortable. … There’s a lot of room for lots of areas of research but because it’s a rare disease it doesn’t get the funding.”
Floris said receiving a diagnosis like amyloidosis can make people feel alone, but she is hoping Fit to Be Tied can show sufferers and survivors that they don’t have to face the disease on their own. The race will be held rain or shine.
“We’ll still be there if it’s pouring rain,” she said.