Tuesday, Oct. 17, 2006 | 7:32 a.m.
Twelve-year-old Kristin Walters talks glowingly of her appearances on the annual Muscular Dystrophy Association Jerry Lewis Labor Day Telethon, rhythmically moving her delicate hands for emphasis.
Tipped with pink fingernail polish, they are the only parts of her body that move without assistance. She has been afflicted with spinal muscular atrophy, a progressively degenerative neuromuscular disease, since infancy.
In 2003 and 2004, Kristin was MDA's Nevada poster child, and helped again during last month's telethon that raised a record $61 million in nationwide pledges. One of the sparkling charms on her bracelet reads "platinum princess," symbolizing her value to the organization.
And that's the irony in Kristin's story.
Kristin, whose cherubic face and broad, toothy smile have helped put wheelbarrows of money into MDA coffers, needs a replacement for the wheelchair lift-equipped 1994 Ford van with 120,000 miles that is in constant need of repair.
The van, Kristin's family says, takes her to MDA events and the clinic for her treatments - and provides her freedom because an ordinary car cannot transport her 300-pound electric wheelchair.
Kristin also would benefit from a laptop computer that would help the aspiring writer maintain her all-A's average in the seventh grade at Henderson's Mannion Middle School. The family's old desktop computer is technologically outdated. And it is difficult for Kristin to operate the mouse and keyboard or see the screen with her limited movement, her family said.
But Kristin - despite her promotional efforts on behalf of MDA, is like other children with muscular dystrophy who have needs beyond the devices and services provided by the medical charity.
"There are many holes that many people with MD and their families fall through," says Kristin's mother, Michele Walters-Garrott. Nonetheless, she said, the family remains ardent supporters of MDA despite its lack of some vital services, especially in the fields of transportation and technology.
The millions of dollars raised by MDA does not regularly provide wheelchair-lift vans or laptop computers to afflicted clients, the association acknowledges. The reason? Not enough money.
Nor does the organization as a rule cover the cost of disposable medical supplies such as bed pads and bladder-control pants made necessary by the loss of muscular functions, or mechanical medical equipment such as a Hoyer lift, a device designed to hoist and transfer disabled people from their wheelchairs into beds or bathtubs.
If such items are donated to MDA, they are distributed to clients through so-called "loan closets" based on perceived need.
"The MDA does a tremendous job with what it does provide and with its funding of scientific research to find a cure," said Kristin's stepfather, Steve Garrott, a retired California police officer who works as a security training specialist at the Bellagio .
"We certainly do not advocate that the MDA cut back on research to provide (wheelchair-lift) vans. But it could serve as a clearing house to purchase such vans through federal grants, contracts with automakers or by lobbying the government."
As a long-standing policy to avoid bureaucratic red tape, MDA does not seek federal assistance.
Kristin's parents, who also have healthy twin 19-year-old sons, say MDA has provided the family with medical supplies, a significant partial payment of Kristin's electric wheelchair, doctor referrals and a summer camp that has been a source of joy for Kristin.
One reason the Garrotts say they depend so much on MDA is because they are working, middle-class homeowners - too wealthy for Kristin to be on Medicaid (although they have health insurance for her) and too poor to outright buy a wheelchair-lift van or laptop computer.
Bob Mackle, national MDA spokesman, said the $61 million raised during the telethon - accounting for about a third of the organization's annual operating budget - does not go as far as people might think.
He said his organization is in a constant "balancing act" to meet the needs of almost 1 million Americans with more than 43 genetic diseases that destroy muscles. (Muscular dystrophy itself accounts for about one-quarter of those stricken.)
"Our basic philosophy is to help with the most vital needs in daily lives," Mackle said by phone from his headquarters in Tucson. "We focus on our research and on our clinic program that addresses neurology, respiratory therapy and a whole range of medical situations."
MDA sponsors 235 such clinics across the United States, including one in Las Vegas.
"In an ideal world, we would have enough to provide vans, computers - all of those things," he said. "But to do so, we would need to bring in multiples of what we make now. Instead, we focus on providing wheelchairs, leg braces and communications devices."
MDA last year helped purchase more than 3,100 wheelchairs and leg braces as well as hundreds of communication devices for its clients, repaired more than 5,700 wheelchairs and loaned about 4,500 pieces of donated durable medical equipment.
But MDA, Mackle said, may never be able to provide such high-ticket items as wheelchair vans, laptop computers and Hoyer lifts.
"We occasionally get wheelchair-lift vans donated, but unfortunately they come from a family member after the person (with muscular dystrophy) passes away," Mackle said.
MDA has looked into providing laptop computers to clients, he said, but many private computer companies choose to run their own giveaway promotions. His group, Mackle said, directs clients to programs that can benefit them.
While MDA's original mission was to raise money for treatment and cure of the disease - that's still its primary goal - it has since expanded to pay for such benefits as wheelchairs, clinics and summer camps. About 77 cents of every dollar raised goes to its mission, it says.
That ratio "is not too bad, especially when you consider the weight of MDA's entire program and so many diseases it addresses," said UNLV economics professor Tom Carroll, who does extensive statistical analyses of nonprofit organizations.
"Fundraising can be a big problem because a number of organizations try to hide the amount they spend on fundraising, putting the honest ones that do report the cost of fundraising at a statistical disadvantage. So 23 percent (in fundraising costs) is not a particularly bad amount to spend."
MDA also sponsors 290 family-support groups and last year sent 4,100 disabled people ages 6 to 21 to 80 camps at no cost to the campers or their families.
Last year, MDA's $175 million operating budget funded $79 million in patient and community services (including clinics and summer camps), $34 million in research, and $21 million for health education. The organization spent $7.8 million in salaries for management and fundraising staff.
MDA critics say the money isn't being spent efficiently.
"Let's see them (MDA and Lewis) tell viewers during the telethon that they won't buy a little girl a wheelchair-lift van or a computer to help her keep up in school and see if they still raise $61 million," said Mike Ervin, 50, of Chicago, an MDA poster child in the early 1960s who founded Jerry's Orphans, a group critical of Lewis and MDA's fundraising methods.
Ervin, who like Kristin has spinal muscular atrophy, said it takes more than reliance on old-fashioned, outdated and exploitive methods of rasing money to "bring about significant change in these children's lives.
"At some point we have to say that kids like (Kristin) have a right to the things they really need and that we, as a society, have to help them get them," he said.
Mackle said that despite MDA's full disclosures during its annual fundraising effort about how donated dollars are spent, there are still misconceptions.
"If you watch the telethon, we make it clear the types of the programs we provide and what we don't pay for," he said. "We do what we can to dispel the myth that we take care of everything. No organization can.
"There is only so much that we do with what we raise. I wish we had enough to pay for everything because it is heart-wrenching for us. We know these families intimately. We don't want to tell them we want to help more but we can't. But sometimes that is the situation."
Still, even some MDA supporters have trouble accepting that more cannot be done to help.
Real estate agent Sam Wagmeister, who for the past four years has volunteered as a telephone worker during the local telethon, says he is bothered by the irony that Kristin has done so much to raise money for MDA, yet some of that money is not going toward a new wheelchair-lift van or a laptop computer for her - things that would really improve her life.
"This little girl is the face of the MDA. She is the one who touched my heart," he said.
He added that while he too would not take money away from research to buy vans and computers, something should be done to help Kristin and her family.
Kristin says she just wants some normalcy in her life.
"I think of myself as a regular kid who just needs a little extra help," she said.
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