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  ALS victim hunts for cure in Ukraine Clinic offers hope in stem cell treatment
Posted July 17, 2002 in ALS News

As a U.S. naval officer and accomplished tennis player, Rick Murray faced pretty good odds when it came to life's battles, big or small.

Then came the tennis match in 1998 when his son kept hitting to Murray's left, volleying past the tennis coach as he hesitated to his right.

'He beat me two sets, which he rarely did -- in fact he never did,' said Murray. 'There was this half-second delay . . . I knew something was wrong.' It took months, but doctors diagnosed Murray with amyotrophic lateral sclerosis -- also known as Lou Gehrig's disease -- a rare nerve affliction that inhibits brain signals from reaching the muscles. The disease kills most patients within five years as it steadily disables muscles, including those that control breathing. There is no known cure.

Murray is fighting against long odds these days, traveling from Jacksonville to Ukraine this week to undergo therapy using stem cells -- an extremely promising medical tool but one U.S. scientists say is a decade away from approved use here.

Stem cells are the body's 'master cells' capable of growing into any tissue type. Researchers say they show promise to cure almost any disease, from heart disease to brain disorders.

In Murray's case, the hope is that embryonic stem cells taken from aborted fetuses can be used to repair damaged motor neurons failing to carry his brain's message to his muscles.

Although there is excitement, research in the United States on embryonic and less-controversial adult stem cells has not progressed beyond test tubes or experiments with animals.

Scientists still aren't sure where stem cells should come from, how they should be introduced into a patient, or how to teach them to grow into a specific body part.

Embryonic stem cell research is being slowed by ethical concerns. President Bush prohibited further research, except on stem cells already available to scientists.

It may be five years before scientists are ready for human trials and longer before doctors can offer treatment.
Murray knows the status of U.S. research and understands the ethical concerns. The procedure is legal in the Ukraine, where doctors say stem cells come from legal abortions.

'If that is the law, then so be it,' said Murray, a 61-year-old father of three who isn't left with many other choices.

Conventional treatment focuses on helping patients cope with symptoms and avoiding complications to prolong life.

ENCOURAGING REPORTS

Murray, who is approaching an elite 20 percent who live five years past diagnosis, is encouraged by results two ALS patients say they received from embryonic stem cell treatments at the Cell Therapy Clinic in Kiev.

One said her condition hasn't gotten any worse. A Wyoming man with whom Murray has spoken says he regained the ability to walk.
'I've been battling this for more than four years. I've left few stones unturned. So I'm going to turn this one over,' said Murray, whose once bulging calves appear soft under leg braces he uses with a walker to struggle across his living room.

There was a time when Murray ran marathons. His goal this year is to climb seven rows to his season ticket seats to watch the Jacksonville Jaguars at Alltel Stadium. 'CLOCK IS TICKING'

'My clock is ticking,' Murray said. His basic philosophy now involves something Cal Ripken said when he broke baseball's consecutive game streak a few years ago:

'I get up. I go to the ballpark. I do my very best.'

A neurologist who treated Murray and a top adult stem cell researcher in Florida said the jury on stem cells is out. In fact, they haven't heard the entire case.

Alan Berger of Shands Jacksonville said researchers in Tampa who used stem cells to treat a mouse with ALS showed the mouse lived longer than his untreated counterpart.

'I think it's too early to tell,' Berger said. 'The role of the physician is not to squash hope but to evaluate treatment.'

Murray's risks appear minimal and benefits are possible, Berger said. The biggest downside appears to be the $ 16,000 Murray will pay out of pocket for intravenous injections of stem cells on four days.

Berger warns ALS patients about snake oil salesman who prey on desperate victims. 'There are a lot of people who take advantage,' Berger said.

Murray's wife, Sherry, remembers when doctors broke the news. 'He basically said people get dealt cards, and you got a bad hand.'

Sherry Murray said she is trying to remain cautious for her husband's sake. 'I just hope he's not disappointed if it doesn't work,' she said.

Dennis Steindler, a University of Florida researcher who published successful results of adult stem cell treatments in animals, said he too is hopeful. 'If a person with a disease like this wants to try something, this treatment is not unreasonable,' Steindler said.

Murray probably won't do himself any harm and might even see a benefit, he said. 'Breakthroughs suggest the human body regardless of age is receptive to regeneration, and that stem cells are the key players,' Steindler said.

CLINIC POLICY

Physicians with Cell Therapy Clinic could not be reached to discuss the procedure. In letters to Murray, physician Alexander Smikodub said it was against clinic policy to share previous patients' information, but that there had been no negative results since treatment began last year.

Amyotrophic lateral sclerosis affects about one to two in 100,000 people. Little money is spent on researching the cause or cure, according to ALS Therapy Development Foundation, a group which does both.

Janice Power, a foundation researcher, investigated the Cell Therapy Clinic treatment by talking with doctors. Power said she is not able to recommend the treatment.

'Although the foundation has not received any reports of ALS patients being harmed by [the treatments], we have not received any verifiable reports of improvements.'

Power said Cell Therapy physicians failed to give important details, such as their method of cell extraction from the aborted fetuses considered critical.

They also suggested the number of cells injected is not important since cells divide once in the body. However, most U.S. research shows greater success depending on the number of cells injected in animals.

Power talked with Don Cook, the Wyoming man who is now walking. She said success depends on more than one good result.

'Without additional patient claims, a benefit in a single patient is unfortunately and most likely just chance,' she said.

Before he left Saturday, Murray said he was trying to temper his enthusiasm. 'My dilemma is preparing myself for the therapy to be unsuccessful while remaining hopeful.'

Murray is not ready to give up. 'My hope is that a month from now, I won't be sitting here,' he said. 'I'll come down to the newspaper and help you write an article that says, 'Walking again, stem cells cure man.'

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