About eight years ago, when Pat and Andy Loewi learned that their daughter, Samantha, had congenital muscular dystrophy, they had more questions than could be answered.

The Loewi Family: Andy, Kim, Pat and Samantha

"We felt very helpless," Pat Loewi says. "Then we thought, one thing we can do is raise money for research."

The Loewis knew another couple whose child had a rare disease, and who raised funds by writing letters.

"We said, 'We could do this,'" says Loewi, a corporate consultant for charitable giving. "Plus, we'd have a cocktail party as a thank-you. Why not have it very upbeat?"

Each year, the Loewis write to colleagues and friends explaining Samantha's disease and the fact that no cure exists. In the letter, they describe their efforts to raise funds for MDA research into their daughter's type of muscular dystrophy. The couple asks for any contribution the letter recipient can provide. The letter also serves as an invitation to the Loewis' annual party as a thank-you to those who donate.

Eight years later, the family has raised a quarter of a million dollars for MDA research, targeted at congenital muscular dystrophy, one of nine forms of dystrophy under MDA's umbrella. (See story about CMD.)

"'Congenital' is a catchall and less prevalent form of muscular dystrophy," says Andy Loewi, a Denver attorney. "We wanted to get more going. We asked that funds raised be earmarked for this. What felt good is that we could get it right into research and we're grateful MDA is willing to do this."

MDA grantee Kevin Campbell at the University of Iowa School of Medicine is part of the research team that the Loewis' efforts help support.

Andy says people look forward to the annual gathering, held on an August evening and featuring two hours of music, food and socializing. About 150 people attend the party each summer, and local restaurants donate their food and service staff.

"We feel increased support each year," he says. "It's very empowering. And people like being asked to give to something so personal."

With a diagnosis of congenital muscular dystrophy, he says, "There's an immense sense of helplessness, and there's no real cure and often no real treatment. This makes us feel like we're not alone."

Restaurants have been gracious about helping, Pat said. The Loewis do nearly all the work with some help from the local MDA staff.

Andy says a word processor is basically all that's needed to get a letter campaign started.

"People tell us how much they like receiving our letters," he says. "It's pretty easy to do this. We work hard at it, but any MDA family can do this. We make a bigger deal than you may need to but this is tremendously therapeutic.

"The most difficult part is writing the letter because it's so emotional," he says. "We spend a huge amount of time on it but it doesn't have to be that involved."

The heartfelt letter to friends and colleagues often includes updates on Campbell's research. Pat says a simple letter to friends asking for help, followed by an ice cream social, can work just as well.

For Samantha, 9, the event has become "my party."

"I love the support from everybody and I get to eat cake first," she says.

About 20 children attend the event. Some are Samantha's friends, and several couples bring their children. This year the Loewis hope to include entertainment for children.

Samantha's sister, Kim, 22, a researcher for the U.S. Senate in Washington, tries to attend the annual gathering. The two are extremely close, Pat says.

Besides their summer fund-raiser, the Loewis devote time to other MDA activities. Andy is an MDA national vice president, and both speak on behalf of the Association to raise awareness and talk about parenting a child with muscular dystrophy.

The Loewis feel positive about the advances made so far.

"What we see in research gives us tremendous hope," Andy says.