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Taxpayers Get to Help ALS Research

By Jackie Jadrnak
Journal Staff Writer
    New Mexico taxpayers getting refunds will have the option next year to decide if they want to contribute to research into amyotrophic lateral sclerosis, or ALS,— better known as Lou Gehrig's disease.
    The disease destroys brain cells that control a person's movement, leaving an intellectually active mind in an unresponsive body.
    "Its average onset was 55, but we're seeing patients who are younger and younger," said Terie Baker, executive director of the New Mexico chapter of the ALS Association. She spearheaded a successful effort in the last legislative session to allow taxpayers to send part of their refund to an ALS research fund for the University of New Mexico.
    No one knows why the disease is showing up at somewhat younger ages, according to Dr. Marcus Keep, a UNM neurosurgeon involved in ALS research.
    "One of the possibilities is that there's an increase in heavy sports activities," he said. Every time you move, he said, your motor neurons are stressed and their metabolism increases. It's possible that heavy use can "burn out" those neurons in susceptible people.
    Some pesticides also are poisonous to nerve cells, so some people suspect a growing load of environmental toxins are leading to the neural destruction, he said.
    Baker said tax refund check-offs generate an average of $20,000 for a cause in New Mexico. "We're hoping for more. We're sending letters out to let people know about this," she said.
    "I believe Missouri and New Mexico are the only states that have this" check-off for ALS research, she added.
    Baker said she is particularly excited that the money can stay in New Mexico. "Somebody is going to find what causes and cures ALS. What if it's right here?"
    Keep said his research project is the only one on ALS currently at UNM, but he expects other researchers will come up with proposals if money becomes available.
    He's pursuing an investigation of cyclosporin, a drug that suppresses the immune system and is given to transplant patients and people with autoimmune diseases. The drug is believed to have protective effects on nerve cells, he said.
    Initial trials by other researchers many years ago showed it didn't help ALS patients, but Keep thinks it's because the drug was taken orally and didn't cross the barrier that blocks some drugs from reaching the brain.
    He has injected the drug into the brains of mice with ALS— in humans, it probably would be delivered through a catheter into the fluid in the spine— and found it doubled their life expectancy. Since half of people die within three years of being diagnosed with ALS, that would mean they might survive six years post-diagnosis, he said.
    Keep noted that what works in mice doesn't necessarily work in human beings. He and neurologist John Chapin are trying to get a grant to test the injected drug on 10 ALS patients.
    Keep and researchers in Sweden are partners in a company to develop the drug and hold a patent on its use for ALS. They have won an "orphan drug" designation, which reduces the cost of developing cyclosporin as an ALS treatment.
    An orphan drug is one intended to treat a disease that affects fewer than 200,000 Americans; about 30,000 are believed to have ALS, according to Baker.
    At this point, Rilutek (generic name: riluzole) is the only drug approved by the Food and Drug Administration to treat ALS, and it extends life by about three months, Keep said. That drug slows the release of glutamate, an amino acid that helps transmit messages between neurons.
    One theory on ALS is that the motor neurons die because glutamate builds up to excess levels, or that the nerve cells in people with ALS are particularly sensitive to glutamate, Keep said.
    Some people also take vitamins and herbal supplements, which may have some positive effect in fighting harmful free radicals in the body, he said.