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11-Year-Old Jason Metcalfe Tops $12,000 Raised for The ALS Association

April 15, 2004

Inspired by his friendship with ALS patient George Chapman, 11-year-old Jason Metcalfe of Florida has achieved something very few his age manage to do. Jason Metcalf has raised more than $12,000 for The ALS Association in support of its mission to find a cure for and improve living with ALS.

Jason Metcalfe

Jason first met George Chapman during a tea party at the home of his principal, Sharon Chapman. Jason agreed to go because he was told there would be another boy there. When the other boy failed to show up, Jason met someone who would change his life. He met George Chapman, Sharon's husband. Something clicked, they became close friends and visited each other often.

One day at school Jason saw Chapman in a wheel chair. He asked his mother what was wrong. Jason learned that his close friend had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease. In addition, Jason learned that there was no known cure for this devastating disease.

As he learned more about ALS, one particular aspect hit home with Jason. "I could never imagine having trouble with all my muscles," Jason said. He did, however, know what it was like to have trouble with some muscles. Jason was born with dysgraphia, a condition that affects his hands for which he goes to occupational therapy weekly. Dysgraphia has had an impact on Jason's studies because it can hurt to write and, until recently, he was struggling in school.

When Jason told his mother he wanted to become a research scientist and find a cure for ALS, his mother told him he needed to get better grades. Buoyed by his goal, Jason is now an "A" student.

Recognizing that it will be many years before he can become a research scientist, Jason decided he had to do something now to make a difference. He chose to launch his own fundraising campaign in support of The ALS Association and its premier research enterprise.

"Jason Metcalfe's inspiring effort on behalf of his dear friend, George Chapman, is a touching gift to the ALS community," Gary Leo, president and CEO of The ALS Association said. "He has shown vision and compassion far beyond his young age."

Starting with a goal of $500, Jason took his allowance, along with money from the tooth fairy, and bought candy bars to sell to raise money. He also began to aggressively solicit donations for ALS research. Word spread about Jason's grassroots efforts, and the checks started to arrive daily at his home. In three months, he had raised over $5,000, ten times his original goal.

"Every day when I go home, I run outside and check the mail," Jason said. "My mom gets the bills, and I get nice letters with checks in them." Checks have come in from across the country; one came from Alaska.

Greg Stuart, ALSA's vice president of resource development, traveled to Florida to personally meet Jason. "Jason Metcalfe is a truly inspiring young man," Stuart said. "I am in awe of a fourth grader, who upon meeting a person with ALS, decided that his goal in life is to become a research scientist and help find a cure for this disease."

During the visit, Stuart and Dara Alexander, president of ALSA's Florida Chapter, invited Jason to take part in The ALS Association's National ALS Advocacy Day and Public Policy Conference, on May 16-18 in Washington, DC.

"Your story has touched the lives of many and will continue to have a powerful impact and play a significant role in spreading awareness about ALS," Alexander told Jason. "There are so many topics that need to be discussed and laws that need to be passed and implemented. There is still much work to be done. I am proud to have you partner with us in this important effort."

Jason recognizes the importance of advocating for increased government support for ALS patients. "Patients need things," Jason said. "Medicare insurance doesn't want to pay until there is a problem. We need to change that."

George Chapman lost his battle with ALS in February, but Jason vowed to continue to wage his personal war against the disease. He revised his fundraising goal, hoping to raise $10,000 by his 16th birthday. In late March, The ALS Association learned that Jason had reached his goal - five years ahead of schedule.




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