Son's ALS diagnosis fuels developer's drive to help

VIRGINIA BEACH

Two icons of 31st Street Park are in close proximity to each other - King Neptune and Bruce Thompson.

It's hard to tell who's standing in whose shadow.

Thompson is the developer who cajoled, nudged and shoehorned the controversial $79 million Hilton Hotel/31st Street Park into reality. He's been called "the consummate capitalist" and "a sophisticated card player," a workaholic who sees angels in the details.

But the CEO of Gold Key/PHR Hotels & Resorts, said something that happened a year and a half ago has changed him profoundly. His son Josh was diagnosed with ALS - amyotrophic lateral sclerosis, or Lou Gehrig's disease. Since then, the gregarious 34-year-old has gone from a surfer and fisherman to someone who is unable to move or speak.

"When you get ALS, it's like having a coffin built around you," said Bruce Thompson, 57, standing at 31st Street Park on Friday.

"A glass coffin," added Thompson's son Chris, 29.

At first, the diagnosis of ALS was rejected - it's rare among young men like Josh. He couldn't use his arms properly, and doctors tied the problem to a surfing injury.

Josh spent six weeks getting treatments to flush metals from his body. Then 30 days undergoing magnet therapy. Then 12 weeks with an internist, having his blood replaced.

Each treatment built up expectations, and each time there was a crushing letdown.

Finally, doctors at Johns Hopkins in Baltimore offered the diagnosis of ALS, the progressive neuromuscular disease that carries a three- to five-year life expectancy.

The only treatment: a drug that would extend Josh's life by 30 percent and the quality of his life by 50 percent. Drug companies invest little in ALS research, the Thompson family discovered. Not enough people are affected by the disease.

"It enraged us to some degree," said Bruce Thompson, who became a believer in the need for more ALS research in general and stem-cell research specifically. That inspired him to provide a potentially record-breaking boost to a local ALS fundraiser Sunday.

This year, the Thompsons formed their own team to join in the annual Walk to Defeat ALS. They didn't expect such an outpouring of support. Their Web site - www.jtwalk.org - now has more than 3,600 people signed up to walk with them.

Bruce Thompson believes the event will raise $1 million for ALS research. He is certain it will be the largest ALS event ever in the U.S., he said; the region's ALS director concurs.

"The JT Walk has already broken all records nationwide for the largest single team," said Cathy Easter, regional director for the D.C./Maryland/Virginia ALS Association. "In fact, they've completely blown it out of the water."

On Sunday, Josh Thompson will watch from a Hilton balcony as the JT Walk team makes its way down Atlantic Avenue from 34th to 31st streets, where it will join the rest of the Walk to Defeat ALS teams.

The father's eyes moisten as he envisions thousands marching toward 31st Street, toward his son's balcony, with the First Colonial High School marching band leading the way.

"I really hope when he looks out there, it will give him the will to fight," Bruce Thompson said.

Before, he said, he never had the chance "to see all the kindness and generosity in people. It has changed me in a way that's hard to fathom."

John Warren, (757) 222-5114, john.warren@pilotonline.com