antiquity
05-23-2002, 05:18 PM
Minnesota mom becomes 'heat-seeking missile' for MD funds
Todd Milbourn
Star TribuneĀ*Published May 22, 2002WASHINGTON, D.C. --
Until they heard from Cheri Gunvalson, many members of Congress didn't know much about the form of muscular dystrophy that afflicts her son, Jacob.
"They just had no clue it was the number one genetic killer of children worldwide . . . and that there's no treatment," said Gunvalson, a registered nurse from Gonvick, Minn.
Gunvalson says she phoned 430 congressional offices and met with dozens of legislators face to face and, when President Bush signed a bill last December, won a nearly two-fold increase in federal research dollars for muscular dystrophy.
And she's still at it.
Gunvalson and advocates for those with Duchenne muscular dystrophy are now pushing for $10 million for the Centers for Disease Control and Prevention to collect more data on the disease. Last week she was at the University of Minnesota, meeting with scientists to discuss research progress. Under the law, three major research centers will be established, and the university hopes to play a part.
At her urging, Minnesota Democrats Sen. Paul Wellstone and Rep. Collin Peterson sponsored the legislation, which is the only comprehensive, disease-specific bill that Bush has signed. "It was the ultimate grassroots," Wellstone said. "I mean, this mother did all this with a computer and a phone in a farmhouse in northern Minnesota, and probably in a flannel nightgown."
Artist and jokester
Jacob is a lot like other 10-year-olds growing up in rural Minnesota. But Duchenne, the most common form of muscular dystrophy, is gradually weakening his muscles. Jacob is still able to walk short distances. Many boys with the disease -- it affects one in every 3,500 boys -- are in a wheelchair by his age.
Its early signs include difficulty climbing stairs and a wobbly gait, which usually appear between ages 3 and 5. The disease eventually progresses to the heart and lungs, before killing the victim, usually before age 21.
Jacob enjoys watching TV, playing video games and riding go-karts around the neighborhood. He's shy around people he doesn't know, but around the house he's the family prankster, his mom said.
"When I open my fridge, I sometimes find a rubber mouse," she said. His mom describes him as a gifted artist who works in several mediums.
"I do all animals because it's boring drawing scenery and other stuff," Jacob said.
Jacob has a brother, Ben, 13, and a sister, Kelsey, 7. On the two days a week that she doesn't work, Gunvalson will drop her kids off at the bus stop, then log on to the computer and pick up the phone. She said she tries to balance her time working on Duchenne with the needs of her kids and her husband, John. "Some mothers golf, some mothers have horses -- well their mother has a computer," she says.
David Mesick of Eden Prairie, a board member of Parent Project Muscular Dystrophy, said Gunvalson was the "fireplug" that helped turn the bill into law.
Joel Wood, a top insurance industry lobbyist in Washington, whose son James has Duchenne, calls Gunvalson, a "heat-seeking missile."
"She works a special magic. She can connect on both a substantive and emotional level," said Wood, who worked with Gunvalson on the bill. Gunvalson explains her success this way: "I never give up, and I'm always polite."
Gunvalson and Wood, a Republican, said the Minnesota Democrats' advocacy and ability to work across the aisle were crucial. Wood said that Wellstone's familiarity with the National Institutes of Health (NIH) and advocacy on other health issues made him a key ally. Wellstone is a member of the Senate Health, Education, Labor and Pensions Committee.
Duchenne affects males, with rare exceptions. The disease is usually inherited, though a third of the cases are spontaneous mutations.
After Jacob's muscular dystrophy was diagnosed, Gunvalson said, she was outraged to find that there was sparse federal funding for Duchenne research. "The way the research was going I didn't believe it would get here in time for my son without federal involvement," she said.
'On the verge'
In fiscal year 2001, $14.3 million of the NIH's $17 billion budget was devoted to muscular dystrophy, including about $9 million for Duchenne research, Wellstone's office said. The Congressional Budget Office estimated that the law would increase funding for muscular dystrophy research by $54 million over the next four years.
Although the Muscular Dystrophy Association has raised tens of millions of dollars annually through its Labor Day telethon, hosted by Jerry Lewis, it generally doesn't advocate for federal dollars.
Mesick said that because of the visibility and success of the MDA telethons, there is a perception that enough is being done for the disease. Parent Project was established in 1994 to push for federal support to find treatments and a cure.
Researchers are exploring possible gene therapies and are using stem cells to regenerate some muscles in laboratory tests. "We are on the verge of making meaningful progress in the treatment of [Duchenne] for the first time in history," said Dr. Lee Sweeney, a muscle biology expert at the University of Pennsylvania.
Said Gunvalson: "It's not a question of whether, but when this disease will be conquered. As soon as there's a medicine, we'll be on the first airplane to get it. We're just keeping him as healthy as possible until that time."
Todd Milbourn
Star TribuneĀ*Published May 22, 2002WASHINGTON, D.C. --
Until they heard from Cheri Gunvalson, many members of Congress didn't know much about the form of muscular dystrophy that afflicts her son, Jacob.
"They just had no clue it was the number one genetic killer of children worldwide . . . and that there's no treatment," said Gunvalson, a registered nurse from Gonvick, Minn.
Gunvalson says she phoned 430 congressional offices and met with dozens of legislators face to face and, when President Bush signed a bill last December, won a nearly two-fold increase in federal research dollars for muscular dystrophy.
And she's still at it.
Gunvalson and advocates for those with Duchenne muscular dystrophy are now pushing for $10 million for the Centers for Disease Control and Prevention to collect more data on the disease. Last week she was at the University of Minnesota, meeting with scientists to discuss research progress. Under the law, three major research centers will be established, and the university hopes to play a part.
At her urging, Minnesota Democrats Sen. Paul Wellstone and Rep. Collin Peterson sponsored the legislation, which is the only comprehensive, disease-specific bill that Bush has signed. "It was the ultimate grassroots," Wellstone said. "I mean, this mother did all this with a computer and a phone in a farmhouse in northern Minnesota, and probably in a flannel nightgown."
Artist and jokester
Jacob is a lot like other 10-year-olds growing up in rural Minnesota. But Duchenne, the most common form of muscular dystrophy, is gradually weakening his muscles. Jacob is still able to walk short distances. Many boys with the disease -- it affects one in every 3,500 boys -- are in a wheelchair by his age.
Its early signs include difficulty climbing stairs and a wobbly gait, which usually appear between ages 3 and 5. The disease eventually progresses to the heart and lungs, before killing the victim, usually before age 21.
Jacob enjoys watching TV, playing video games and riding go-karts around the neighborhood. He's shy around people he doesn't know, but around the house he's the family prankster, his mom said.
"When I open my fridge, I sometimes find a rubber mouse," she said. His mom describes him as a gifted artist who works in several mediums.
"I do all animals because it's boring drawing scenery and other stuff," Jacob said.
Jacob has a brother, Ben, 13, and a sister, Kelsey, 7. On the two days a week that she doesn't work, Gunvalson will drop her kids off at the bus stop, then log on to the computer and pick up the phone. She said she tries to balance her time working on Duchenne with the needs of her kids and her husband, John. "Some mothers golf, some mothers have horses -- well their mother has a computer," she says.
David Mesick of Eden Prairie, a board member of Parent Project Muscular Dystrophy, said Gunvalson was the "fireplug" that helped turn the bill into law.
Joel Wood, a top insurance industry lobbyist in Washington, whose son James has Duchenne, calls Gunvalson, a "heat-seeking missile."
"She works a special magic. She can connect on both a substantive and emotional level," said Wood, who worked with Gunvalson on the bill. Gunvalson explains her success this way: "I never give up, and I'm always polite."
Gunvalson and Wood, a Republican, said the Minnesota Democrats' advocacy and ability to work across the aisle were crucial. Wood said that Wellstone's familiarity with the National Institutes of Health (NIH) and advocacy on other health issues made him a key ally. Wellstone is a member of the Senate Health, Education, Labor and Pensions Committee.
Duchenne affects males, with rare exceptions. The disease is usually inherited, though a third of the cases are spontaneous mutations.
After Jacob's muscular dystrophy was diagnosed, Gunvalson said, she was outraged to find that there was sparse federal funding for Duchenne research. "The way the research was going I didn't believe it would get here in time for my son without federal involvement," she said.
'On the verge'
In fiscal year 2001, $14.3 million of the NIH's $17 billion budget was devoted to muscular dystrophy, including about $9 million for Duchenne research, Wellstone's office said. The Congressional Budget Office estimated that the law would increase funding for muscular dystrophy research by $54 million over the next four years.
Although the Muscular Dystrophy Association has raised tens of millions of dollars annually through its Labor Day telethon, hosted by Jerry Lewis, it generally doesn't advocate for federal dollars.
Mesick said that because of the visibility and success of the MDA telethons, there is a perception that enough is being done for the disease. Parent Project was established in 1994 to push for federal support to find treatments and a cure.
Researchers are exploring possible gene therapies and are using stem cells to regenerate some muscles in laboratory tests. "We are on the verge of making meaningful progress in the treatment of [Duchenne] for the first time in history," said Dr. Lee Sweeney, a muscle biology expert at the University of Pennsylvania.
Said Gunvalson: "It's not a question of whether, but when this disease will be conquered. As soon as there's a medicine, we'll be on the first airplane to get it. We're just keeping him as healthy as possible until that time."