Copyright 2004 The Florida Times-Union  
Florida Times-Union (Jacksonville, FL)
January 28, 2004 Wednesday, Community Edition
SECTION: COUNTY LINE; Pg. M-1
LENGTH: 487 words
BYLINE: Mary Maraghy, County Line staff writer

With his spiked red hair stiff with styling gel, Jason Metcalfe fidgeted excitedly in his pin-striped shirt and navy blue suit.

The 11-year-old Middleburg boy was about to hand over more than than $ 1,300 to officials from the national ALS Association, money he had raised selling candy and soliciting donations for research foramyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

The rare neurodegenerative disease, which progressively paralyzes a person, has no known cure.

Greg Stuart, vice president of the ALS Association in California, came to Orange Park last week to meet Jason in person. Stuart said he was moved by the story of this freckled boy who used his tooth-fairy money to buy candy to sell to help his school principal's husband, George Chapman, who has ALS. Jason's goal was to raise $500. But reports of his efforts spread across the country and donations poured in from as far as Alaska.

'Every day I go home. I run outside. I check the mail. My mom gets the bills and I get nice letters with checks in them,' said Jason, who has kept every letter and envelope. He's especially intrigued by one that came with a $ 250 check and a letter addressed to Master Jason Metcalfe.

'I've never been called Master Jason before,' he said, smiling.

Also, UPS recently left a case of 164 Hershey bars at his house that someone had sent him.

'Selling candy is the easy part,' Jason said. 'The hard part is writing all the 'thank you' notes.'

Jason has a handwriting disorder called dysgraphia and as a result he has struggled in school. But after meeting and befriending Chapman about 18 months ago, Jason vowed to become a research scientist and search for a cure for ALS and thus turned his grades from Cs and Ds to As and Bs.

Stuart and Dara Alexander of Tampa, president of the Florida chapter of the ALS Association, arranged to meet Jason at Chapman's house in Orange Park.

A spiffed-up Jason, complete with a Mickey Mouse tie tack on his new red neck tie, greeted them and presented Stuart with a check for $ 1,304.81.

Stuart's eyes bugged when Jason rattled off the total.

'That is very impressive,' Stuart said.

Later, Jason's eyes bugged when Alexander asked if he wanted to speak to lawmakers in Washington, D.C., this spring during ALS advocacy day.

'I think Jason would do a great job and be a compelling witness for our cause,' Alexander said. 'It's amazing how legislators respond to children.'

Jason, who has never been to Washington, said he'd love to go.

Chapman, who may go to Washington, too, depending on his condition, told the ALS officials that he's been overwhelmed by Jason's initiative.

FOOTNOTE:

George Chapman died from ALS on February 8, 2004.

After his diagnosis, Mr. Chapman's focus became fighting for a cure.

He researched the latest information on ALS and technology and helped form an ALS support group facilitated by Brooks Rehabilitation Hospital. He was working with some local doctors to establish an ALS clinic in Jacksonville and was a member of the Amyotrophic Lateral Sclerosis Association's national board of the Lou Gehrig Challenge, a drive to raise $ 25 million for ALS research.

Mr. Chapman read to students and attended nearly all the events at Tynes Elementary. School officials have decided to dedicate the yearbook to Mr. Chapman.

'The kids all knew him. He was very much a part of the campus,' said Carmen Metcalfe, a school volunteer and parent of 11-year-old Jason Metcalfe, who was a close friend of Mr. Chapman and who gained national attention for raising money for ALS research in honor of Chapman.

Jason plans to continue with his efforts to raise money and to someday become a research scientist.

'I think now he's more determined than ever,' Carmen Metcalfe said.