Staff photo Rachel Morgan
Sandy McWilliams is walking from her hometown of Louisville, Ky. to southern New Jersey where her mother lives to raise awareness for a rare brain disease called Progressive Supranuclear Palsy, which her mother was diagnosed with.
Walking for a cure
Rachel Morgan Staff Writer
Sandy McWilliams has walked 200 miles since June 8 - and she still has 500 more to go.
McWilliams is walking from her hometown of Louisville, Ky. to southern New Jersey where her mother lives to raise awareness for a rare brain disease called Progressive Supranuclear Palsy.
McWilliams' mother, Allene Stoneman, was diagnosed with PSP in 2005.
PSP is a neurodegenerative brain disease categorized by loss of balance, personality changes, difficulty with eye movements and speaking, decreased expressive communication and difficulty swallowing, leaving to pneumonia, a primary cause of death for PSP patients.
"People are very cognitive up until the end, very aware of what's happening," McWilliams said.
The length of time from onset to death for PSP patients is usually five to six years. There is no known cause, treatment or cure.
McWilliams decided to embark upon a seven-state, 700-mile trek to raise aware-
ness of this relatively unknown disease.
"I starting rolling around this idea in my head about a year ago," McWilliams said. "No one knows this disease. I at least wanted them to be able to say, 'yeah, I've heard of that.'"
And she put some serious thought in just exactly what she would do to raise awareness.
"This is a motor disorder - my mother can't walk anymore," she said. "I kept thinking about walking, how mothers tell their children to walk to them when they're little. I could walk to my mom and raise awareness."
She walks about 20 miles daily and began training early this year.
And she's not alone in her quest.
Her journey has become a sort of family affair; her 20-year-old daughter Erin is driving the supply car - filled with clothing, food and first aid equipment - on the first two weeks of her trip. These duties will be taken over by McWilliams' husband Terry and their son Scott on Sunday, who will accompany McWilliams for another two weeks. Then McWilliams' other daughter Megan will carry the baton for two more weeks. At the end of the trip, the entire McWilliams clan will walk together to Stoneman's home in New Jersey.
And what does her mother think about McWilliams' 700-mile journey?
"I asked her the other day what she thought," McWilliams said. "And she just said, 'I think it's great.'"
More information, visit McWilliams' website at www.walk4psp.org.
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