Walk to Defeat ALS
When: Sunday, 10 a.m. check in, walk starts at 11 a.m.
Where: Community Park, 691 E. Dayton Yellow Springs Road, Fairborn
Cost: Free. Those who raise at least $75 receive a T-shirt
More info: www.alsohio.org
LEBANON — Donna Burns, of Lebanon, lost movement of her left foot in summer 2010. By Thanksgiving she used a walker, by Christmas, a wheelchair.
Amyotrophic lateral sclerosis, or Lou Gehrig’s disease, hasn’t stopped Burns from joining a walk to raise awareness and money for the ALS Association.
“Last time I took a step was a year ago, with a walker, cane, or my daughter’s help,” she said. “I went from healthy and happy to bedridden and using hospice within a year.”
On Sunday, she and 35 of her friends and family will join the Walk to Defeat ALS at the Fairborn Community Park.
ALS causes the nerve cells in the brain and spinal cord to die. These cells control muscles, leaving patients disabled.
When Burns became ill at age 56, Cincinnati neurologists suggested ALS, but were overruled by a local brain movement specialist.
She was treated for a spinal cord fracture for nine months. By the time she was diagnosed with ALS, 12 of the 20 muscles on her left side had deteriorated.
“It’s a disease that you are told you are dying and there’s no answer,” Burns said.
Her late diagnosis limited her options — from $1,000 monthly medication that was not guaranteed to slow the disease, to participation in clinical trials that seemed futile and long awaited.
Salvation came through the ALS Association, a global nonprofit that fights the disease through research and assistance for patients.
“Currently, there is no known cause, treatment or cure for ALS,” said Marlin Seymour, executive director of the ALS Association Central and Southern Ohio Chapter. “Prognosis is the same today as it was when Lou Gehrig was diagnosed.”
Gehrig, the record-breaking baseball player, popularized ALS when he was diagnosed 72 years ago.
Seymour said numerous tests are needed to determine ALS, sometimes leaving patients undiagnosed for as long as one year. ALS patients have a lifespan of two to five years.
“My world seemed to stop, everything changed,” said Burns’ 21-year old daughter, Krysalea, when she heard the diagnosis. “Without the ALS Association, I have no idea how we would make it.”
The ALS Association provides patients with support groups, guidance from registered nurses and social workers, and medical equipment to rent, like shower chairs and speech devices.
Krysalea Burns said ALS can cost patients as much as $200,000, annually.
Donna and Krysalea Burns said happy memories and their faith helps them cope with the illness that is diagnosed to one to two people out of 100,000.
“I just wish a cure could be found to keep another mother from seeing hurt in her daughter’s eyes,” said Donna Burns.
To donate or participate in the Walk to Defeat ALS, visit www.alsohio.org.
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