Race raises money for amyloidosis research
By Ashley M. Casey
Staff Writer
Floris Palmer isn’t sure how her late husband, Bob, would feel about the walk/run his family started to raise research money for the disease that took him from them: amyloidosis.
“I’m glad we called it ‘Fit to Be Tied,’ not ‘Bob Palmer’s race,’” she said. “He was one to make anonymous donations.”
While Bob’s generosity may have been understated, his spirit was not. Bob worked as a school psychologist in the Liverpool and North Syracuse school districts and was known for the crazy ties he wore to put his students at ease — hence the name of the “Fit to Be Tied” race, which takes place May 21 at Onondaga Lake Park.
The second annual walk/run benefits the Amyloidosis Center at Boston University School of Medicine and Boston Medical Center, where Bob was treated for light chain 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.
Last year’s inaugural Fit to Be Tied race raised nearly $11,000 and drew more than 150 participants; this year, Bob’s wife, Floris, is hoping for 300 runners and walkers. In addition to the 5K run and 3K walk, participants can compete in a crazy tie contest.
“Because Bob Palmer loved wearing crazy ties to school to make the kids laugh, we want to invite you to come run wearing a tie … the more outlandish or creative, the better,” reads the race website, fittobetied.org.
“We hope to have more crazy ties — we had a great response,” Floris said of last year’s race. “We decorated the trees down in Willow Bay [with ties]. It was really fun.”
Willow Bay, the site of the race, was one of Bob Palmer’s favorite places. An avid marathoner and cyclist, Bob spent about two hours a day biking in Onondaga Lake Park. He continued cycling even after he fell ill.
“We live on First Street, and our backyard is the park,” Floris said.
The diagnosis
The first clue that not all was well with Bob came during the 2014 holiday season. Floris noticed her husband refused second helpings at Thanksgiving and Christmas, “which was very un-Bob-like,” she recalled.
The already-trim Bob lost 30 pounds and finally visited his family doctor in the spring of 2015. Suspecting kidney issues, the doctor referred him to a nephrologist. Testing showed that Bob had light chain amyloidosis (AL), the most common form of the rare blood disorder.
Biopsies showed that abnormal proteins had built up in Bob’s kidneys and bone marrow. The Palmers headed to Boston, home of their son Kevin and one of the country’s premier amyloidosis treatment centers at Boston University School of Medicine.
“There’s no major treatment center in New York,” Floris said. “The major treatment centers are Boston and the Mayo Clinic.”
At Boston, Bob received the “gold standard” of amyloidosis treatment: a stem-cell transplant and chemotherapy. Floris said doctors considered Bob a good candidate for the treatment and were impressed with his fitness and low blood pressure.
While the stem cell transplant took, the chemotherapy failed to stop Bob’s amyloidosis in its tracks. In a matter of weeks, the man who had once qualified for the Boston Marathon — “That was a joy,” Floris said — began to use a cane, then a walker, then a wheelchair.
Just before he was scheduled to begin a new course of treatment, Bob Palmer died Oct. 30, 2015. He was 65. The Syracuse Orange fan requested that he be cremated wearing the blue and orange cap his daughter, Megan Luton, had knitted for him and the blue suit he’d worn to Kevin’s wedding.
“He’s missed, and I know he’s missed by people who worked with him,” Floris said.
Floris said Bob retired from Liverpool about 10 years ago, but people with whom he’d worked at North Syracuse schools more than 30 years prior paid their respects at Bob’s calling hours.
The race for research
Before Bob’s death, Floris and her children asked him what he thought of a race to raise money for amyloidosis research. He said it was a great idea, and Fit to Be Tied was born the spring after his passing.
“We’re just trying to channel grief and sadness into action,” Floris said.
Funding for amyloidosis research is scarce, as it is for many rare diseases. Amyloidosis is closely related to blood cancer, but it is not classified as cancer so researchers cannot access funding earmarked for cancer research. Fortunately, Floris said, the Leukemia and Lymphoma Society helps fund amyloidosis research.
Last year’s Fit to Be Tied race raised $10,600 from both race registration fees and raffle ticket sales. Several local businesses will donate raffle prizes, as they did last year.
Floris said her goal for this year’s race, in addition to raising money, is to collect names and contact information for people interested in forming a support group for people who have amyloidosis and those who have lost loved ones to the disease.
“There’s no sense in having two different groups,” Floris said, “because we’re all interested in finding a cure for amyloidosis.”
The nearest amyloidosis support group, she said, is in Rochester, though she joined a private Facebook group for people whose spouses died of amyloidosis.
“I find sometimes it’s easier to talk to people in the closed Facebook group because [I] don’t have to drive there in the winter,” she said.
The Central New York support group could take the form of in-person meetings or an online group like the one in which Floris participates. Either way, the need exists, Floris said.
“You get this diagnosis and you feel so alone,” she said.
By next year, Floris said, she hopes to have completed the process of forming a 501(c)(3) organization to claim nonprofit status. She said next year’s race also will include a blood drive, as amyloidosis patients require numerous blood transfusions over the course of their treatments.
Fit to Be Tied takes place Sunday, May 21, at the Willow Bay area of Onondaga Lake Park. To register, visit fittobetied.org. The race fee is $25. The 5K run begins at 9 a.m. and the 3K walk begins at 9:15 a.m. Ties will be judged at 8:45 a.m. with winners announced after the race. Pick up your packet between 7:30 and 8:45 a.m. at the Sawmill Pavilion.
