Manassas Park man to climb mountain to fight disease

Thomas Seoh will be climbing for a cause come August.

The Manassas Park man wants to help raise money for CureDuchenne.org, which is dedicated to finding a cure or treatment for Duchenne muscular dystrophy, a genetic disease that afflicts young boys.

Seoh will join 11 others from Florida, California, New Jersey and Minnesota on Aug. 29 to climb Mount Rainier in Washington State to raise money to help with research.

The climbers each hope to raise $1 for every foot of the 14,410 feet of the mountain that they climb.

If all 12 participants reach the top of the mountain, they stand to raise roughly $173,000.

“I’m way short,” the 52-year-old father of five said. “I’m coming to the crunch time now.”

One in 3,500 boys who get the disease that slowly paralyzes will die in their late teens or early 20s of cardiac and respiratory failure, according to information at CureDuchenne.org, which was founded by Paul and Debra Miller when their son was diagnosed with Duchenne at age 5.

The disease manifests itself with swelling in the joints and muscles. Boys are usually diagnosed with the disease between the ages of 3 and 5, and are usually in wheelchairs by the time they’re 10 years old.

Roughly 20,000 boys each year are born with the disorder, the Web site stated.

Seoh became aware of the Duchenne community when he was CEO of a biotech company in Strasbourg, France, that was working on a potential medicine for the disease.

He became intrigued with the cause because possible treatments are within sight.

“This is a particularly anxious and hopeful time because several experimental medicines are working their way through clinical trials and financial support now can help this generation of boys,” said Seoh, who also practiced law with the New York and London offices of a Wall Street law firm.

“Some of them will be approved and be on the market in a few years,” Seoh said of the new drugs.

“We’re not looking for something that could be a cure someday,” he said. “We are seeking funds to apply to research that can help this generation of boys.”

Seoh grew up in Seattle, Wash. — within sight of Mount Rainier — but never got around to climbing it until he was older.

In 2000, he first climbed Mount Rainier with a childhood friend to celebrate the millennium.

In 2008, he climbed Mount Kilimanjaro in Tanzania, but he doesn’t count himself an expert because of the two climbs.

“I’m not much of an amateur mountaineer,” he said.

When Seoh heard about the 2009 Climb to Cure Duchenne, he decided to join up before he has to go back to work.

He’s considering a start-up biotech company in the area.

“It sounded like something that would be worthwhile to do,” said Seoh, who moved with his family from France last fall so his wife, Pat, could be near her aging mother.

Seoh said there’s no way to train for altitude around here, but he works to get in shape as much as he can by hiking Old Rag Mountain, and the Cedar Run and White Oak Canyon trails in the Shenandoah Mountains.

An excursion up Mount Rainier takes about four days, with equipment checks and preliminary training on the first two days, Seoh said.

On the third day climbers go partway up the mountain to a place called Camp Muir in Mount Rainier National Park.

They arrive at the camp about 7 p.m. and rest until midnight, when they start for the summit. Seoh said.

The climbs are conducted at night because there is less chance of an avalanche at night, Seoh said.

“In the middle of the night it’s cold and when you come down it’s less dangerous than coming down at 3 p.m. when the sun’s been beating down all day,” he said.

Depending on the weather and snow conditions, climbers may have to cross crevasses, or small canyons in the snow, using aluminum ladders as bridges, and they do it all at night wearing head lamps, Seoh said.

This climb will be the first time Seoh has climbed for a cause, but he doesn’t think it will be the last.

“I’m interested in and look forward to doing more in the future,” Seoh said

Those interested in helping can visit firstgiving.com/thomasseoh.

Manassas Bureau Chief Keith Walker can be reached at 703-369-6751.