By Andra Lim
The odds never stood in Kam Redlawsk's favor.
Redlawsk, 34, is one in a million people affected by a genetic disorder that has wasted and weakened her muscles, to the point where she now uses a wheelchair.
And because the condition — hereditary inclusion body myopathy — is so rare, the chances that somebody will allocate research funds to developing a treatment can seem like a million to one. The government and Big Pharma have little incentive to produce drugs only a few in the world will use, only a few in the world will pay for.
What's there to do when cold, hard statistics and industrial cost-benefit analysis are stacked against you?
She's become one of the world's most visible advocates for her disorder, blogging about her experiences with it. She's also done web design and other work for the Advancement of Research for Myopathies (ARM) in Encino — which has the only laboratory in the U.S. that focuses on the rare muscular disorder.
“I hate that my name is all over the place, I hate that I'm the focus,” says Redlawsk, who lives in Los Angeles. “I go through a lot of emotional ups and downs. I'd rather just go through it privately, but I'm not going to help anybody if I do it like that.”
This weekend, she's organized a 500-mile bike ride from the Golden Gate Bridge in San Francisco to Santa Monica Pier with a fund-raising goal of $40,000, all slated to go toward research. Fifteen of Redlawsk's guy friends will bicycle the route starting May 12 and arriving in Santa Monica a week later.
“We were joking because this group of guys doesn't look like professional cyclists,” Redlawsk says. “They're not ripped, they're not trained.”
Ted Lubin, 45, says he prefers it that way.
“Part of me doesn't want to be in shape for it, because I want it to be as much of a challenge as it can be,” he says. “Kam has such a difficult time doing simple stuff. It gives me a little bit more of an appreciation of what she's going through.”
The guys will carry all their supplies on their backs and camp out each night — last year, when the biking trip was first established, they once slept in a ditch along a freeway.
Throughout, Redlawsk will live-blog updates of the trip on her website. She'd like to wheel the last few miles with the guys, but making the whole trip is out of the question.
When she was a teenager, Redlawsk noticed that the kinetics of her body were off: She couldn't run as fast as before, and her ankle was floppy, dragging on the ground.
For about five years, throughout college, she didn't know what was wrong — she received multiple diagnoses, but none were correct.
The doctor who finally pinpointed the disorder told her to drop out of school, but Redlawsk didn't listen and graduated with a degree in design.
“I do feel a little bit robbed of my 20s and 30s,” Redlawsk says. “There's so much I can't do.”
Muscle waste has slowly spread up her body — first her legs, and she can now feel her arms, shoulders, neck and fingers beginning to weaken.
The disorder affects every grain of her life. She's gotten stuck on the toilet for hours, has a hard time finding shoes that will fit with her leg braces, and gets cold easily, because her body is incapable of shivering to warm itself.
“The last couple of years has been difficult, not being able to do something despite the amount of will,” she says. “It's difficult admitting that to yourself.”
She tries not to think about what might happen to her body in the future, holding out hope for a treatment.
Dr. Daniel Darvish, who co-founded ARM with his brother, says they'll have a medicine available in a few years, in a best-case scenario. The muscular disorder was officially recognized as a medical condition about 15 years ago, he says.
The Darvishes are developing a pill with sialic acid — a sugar that those with the muscular disorder lack. The researchers are also looking into gene therapy, where a pure copy would replace the mutated gene linked to the disorder, Redlawsk says.
“It's actually relatively easy to cure,” she says.
ARM recently received funds from a pharmaceutical company to put toward research, says Darvish, who is himself diagnosed with the disorder. But the money's not enough to back the whole process, which could cost around $80 million, Darvish says.
That's where the bike ride comes in.
“We compare it to 'The Goonies,'” Redlawsk says. “It's a little group trying to do not-so-little things.”