Most people who have Huntington's disease or may carry the gene for the degenerative brain disease aren't very open about it.

Even admitting having a family member with the illness can make it difficult, or impossible, to secure health and life insurance, said Jill Nagy-Reynolds, a spokeswoman for the Huntington's Disease Society of America.

But Elyse Jones and Derek Downing are breaking the silence about the disease that contributed to the death of their father, Thomas Allen Downing, by organizing the Dayton area's first charity walk to raise awareness and money to fund research to find a cure.

"For me, the most important thing is recognition," said Derek Downing of Xenia. "Awareness is the bottom line."

The walk is set for 9:30 a.m.

Oct. 27 at Library Park in Miamisburg.

Finding a cure is another strong motivator for organizing the charity walk. Jones and Downing don't know if they, or their children, carry the gene for the disease. They considered finding out, but decided against it.

"Do you live knowing and hoping to God for a cure?" said Jones, who lives in Bellbrook.

The disease is genetic and has a 50 percent chance of being passed from parents to children. It strikes between ages 30 and 50, and symptoms progress differently in each person. More than 30,000 Americans have the disease.

Their father didn't want to know either, even after his mother, Elizabeth Downing, died of the disease a decade ago. Thomas Allen Downing died in February after being diagnosed with Huntington's the year before. He was 58.

"He was the smartest man I knew, and near the end it got to where he couldn't walk, talk or eat," Jones said.

She and her brother plan to hold some type of charity event every year in his honor.

Contact the reporter at (937) 225-2342 or

cmagan@DaytonDailyNews.com

How to go

What: Thomas Allen Downing Memorial Walk

When: 9:30 a.m. Oct. 27

Where: Library Park, Miamisburg

Cost: Registration is $25.

More information: firstgiving.com/hdsa-coh