Photograph by Andrea Modica
When Ginger takes off her wig, she looks especially old and frail. But she remains upbeat, and the added years melt away when she speaks. A feature of Werner syndrome is a high voice, so telephone operators often mistake her for a child.
“Several of the doctors said, ‘If I had what you had, I wouldn’t be so cheerful.’ But I say, ‘It’s just little itty-bitty things.’”
“But you know they aren’t itty-bitty.”
“You want me to be moany?” Ginger replied. “‘Oh, that hurts’ all the time? I tell my mother it’s the meanness coming out of me.”
On hearing that peculiar exorcism again, I responded, “Well, if the meanness is coming out, that means that the good in the person is what’s left behind.” Awkwardly, I added a bromide I’d read in a fitness column: “Pain is just weakness leaving your body.”
Ginger said flatly, “I just think of something else.”
Driving to the Deaconess Hospital Wound Care Center, I let Ginger out of the car, and we progressed across the parking lot. “They tell me I shouldn’t be here, because I blow the statistics,” she remarked when we arrived. The rest of the patients were much older.
The pain today was “not too much,” she told the nurse. “About a three.” In the examining room, as the medical technician picked at and pressed upon her tiny ankles and toes, I saw how Ginger dealt with pain. She sucked in a breath and concentrated a sharp stare on her pain.
The podiatric specialist, Robert Sowell, came in to see how the patient was doing. “This is a rare disease in a unique person,” he said, seemingly proud of her. “We’ve had a limited success—”
“No, keep positive,” she interjected.
“—with that left ankle, but not the other,” he said. A spot of fresh blood appeared where he picked off some dead skin. “We’re right on bone here. . . .We’ve got some of her wounds to heal,” Sowell went on. “Chronic foot ulcers like this we see in diabetics, ordinarily. Her tissue is more like an 80-year-old’s.”
After Sowell left the room, the technician took photos of her feet. “Another doctor said he wouldn’t touch me with a 10-foot pole,” Ginger recalled. But Sowell was hanging in with her, proposing plastic surgery, experimental skin grafts, the new boot, whatever Ginger might agree to. On the drive back she insisted: “I don’t want to say I’m handicapped. I don’t feel handicapped. But I told Tommy I wish I’d quit having something go wrong with me.”
Ginger squeezed out a high-pitched cough. She dangled her feet above the floor and chatted about this and that. Scrunched into her seat belt and windbreaker, she could have been my child being driven home from a game or get-together. Wisps of white hair peeked from beneath her pageboy wig.
“My husband asked if when I die I wanted to be buried wearing my wig. ‘Honey, yes!’ I said. ‘That’s how people know me!’”
Having patented the Werner gene, Darwin’s strategy was to understand the biology surrounding the Werner protein. Although it couldn’t serve as a drug itself, the protein might prove useful in other ways.
“We gave ourselves six to nine months and put a half-dozen people on it to see if there were therapeutic targets lurking in there,” recalled Galas. “If there were targets, they’d be proteins that the Werner protein interacted with. Our goals at Darwin were more diffuse than aging research—for example, cancer. We thought it [the protein] might have to do with the control mechanisms of cancer.”
However, Darwin’s study did not make headway, because the biology of the protein was just too complex. No drug targets related to the Werner gene emerged by the end of 1996.
“By the time we did the merger with Chiroscience, I thought, it’s a long shot that it’d have a therapeutic value,” Galas said. “We’d had this exciting discovery, but . . . ” His voice trailed off.
Chiroscience was a pharmaceutical-research company based in the United Kingdom. When Chiroscience acquired Darwin Molecular in December 1996, the Werner syndrome project was put on hold. Nevertheless, the gene performed a final service for its owner:
Chiroscience and Geron Form Joint Research Collaboration Around Gene for Premature Aging
LONDON, UK, and MENLO PARK, CA September 15, 1997—Chiroscience Group pic (CRO-L), through its subsidiary Darwin Molecular Corporation, and Geron Corporation (NASDAQ:GERN) today announce a research collaboration agreement focusing on diseases associated with the process of aging. The collaboration capitalizes on Darwin’s earlier discovery of the Werner syndrome gene, the first discovered human gene which directly affects the aging process.
Geron Corporation was the hot biotech of 1997 on the strength of its own patented “antiaging” gene. The Geron gene made a protein called telomerase. To insiders, telomerase was a much better prospect for drug development than the Werner protein.
Ironically, Geron had been one of the original bidders to corner the Werner gene.
Now Geron picked up the gene as a throw-in to a deal whose purpose was not divulged in the press releases issued by the two companies. Geron’s chief scientist told me that Geron paid Chiroscience “next to nothing” for the option to utilize the Werner gene. In fact, he said, Geron never did exercise its option.
Today Galas says, “It would be crazy to marshal a large research program now to figure out how to cure the disease. She [Ginger] would be long dead. If the biology were understood and it were simple, those patients might be helped. But it’s an extremely orphan disease”—too rare to merit funding.
Galas left Chiroscience soon after the Geron deal. In 1999, before the bubble burst and biotech stocks collapsed, Chiroscience merged with Celltech, another British firm. Then Celltech Chiroscience was bought by an outfit called Minerva. I think of Ginger’s gene as a pea in a shell game, hidden today beneath one company or another. I gave up trying to follow it.
But investments are flowing again into biotechnology; a number of new firms pursue antiaging drugs. The hopefully named start-ups are Elixir, LifeGen, Chronogen, GeroTech, and Juvenon, just to name a few, each having a proprietary target within the matrix of the cell. The buzz about the Werner gene seems a lifetime ago.
Ginger contracted gangrene in her left foot. Her leg had to be amputated between the ankle and knee. Although fitted for a prosthesis, she could not wear it until the wound from her surgery healed. And the wound, naturally, persisted.
A year later the doctors gave up on her right foot, and it, too, was taken off. Her left leg was ready for the artificial foot, but when I spoke with her last, Ginger was still waiting for the right leg to heal. She was in a nursing home. Her husband came to see her every evening.
“I’ll be up and about on my walker,” she promised. “I told Tommy I would.” Her voice sounded strong. “A lot of other people are worse off than I am.”