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Walker fights nerve disorder
By Jim Cornelius

Byron and Melissa Jungjareon.

Melissa Jungjareon is used to challenges.

She has neurofibromatosis (NF), a neurological disorder that causes tumors to grow on the nerves. She has had three brain tumors removed and watched her father die from the effects of the same disorder.

The 25-year-old South San Francisco resident is taking her fight against NF on the road in a awareness-raising walk from Oregon to Illinois.

Jungjareon started her walk in Albany last week and got to Sisters on Sunday, May 5, after a long, cold, windy trek over Santiam Pass.

"I was never so happy in my life to see one of those signs with a truck heading downhill," she said.

Her husband Byron is driving the support vehicle, an RV donated by backers for the spring and summer trek.

Jungjareon hopes that her walk will draw attention to NF, which, in some forms attacks as many as one in 4,000 people. In some cases, like Melissa's, NF tumors grow in the brain and on the spinal cord. More commonly, the tumors grow on the skin and can cover the entire face or body.

It is not a rare condition, yet it is a "low profile" disorder. Jungjareon wants to raise that profile -- and money for research.

She has a deep personal stake in the effort. The disorder is a dominant genetic trait. She wants children, yet there is a 50 percent chance they will be afflicted with the disorder.

According to Jungjareon, doctors told her that the only way to confront the odds is to test a fetus early in pregnancy. If the fetus tested positive, she would have the option to abort the pregnancy.

"I was just disgusted by that option," she said.

That paucity of choices, combined with the havoc NF has wreaked in her life, compelled Jungjareon to take action.

"I felt like I needed to be out there doing something," she said.

The walk from Albany to Chicago seemed like a good way to get the word out, to meet people and encourage them to contribute funds to NF research.

Jungjareon, a preschool teacher, said she might have extended the walk into a true "walk across America," but "I have a time constraint because I have to be back for the next school year in September."

To help with Melissa Jungjareon's cause, visit http://nfwalk.topcities.com/nfwalk.htm. Donations may be made on line.

The National Neurofibromatosis Foundation may be reached at 1-800-323-7938; website: www.nf.org.

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