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  • meifud meifud Dec 3, 2012 2:48 PM Flag

    crain's detroit business news reporting on ALS patients miraculous CUR based recovery

    if you have not read it, google crain's detroit business with the story line "als patient is living his second miracle"

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    • Due diligence

    • Due diligence

    • Eva Feldman

      But there was no equivocation about the miracle that had happened after Harada's first injection.

      Two weeks after the operation, Harada thought he was feeling stronger, that there had been an improvement in his overall health. But he was afraid he was imagining things. That it was wishful thinking. Or a placebo effect.

      Before the operation, Harada could barely limp with the help of canes or handrails up the steps to say goodnight to his kids at his home in McDonough, Ga. If he sat in a chair and his wife put the least bit of resistance on the top of his knee, he couldn't budge his leg off the ground.

      Harada didn't wait for the doctors to test him.

      "I asked my wife to come over and give me a test," he told me in October.

      She braced her hand against the top of his knee, as she had done many times. This time, though, his foot didn't stay planted on the ground. It went up in the air.

      They tried it, again. She pushed harder. He lifted his leg. A third time, his wife really pressing down her hand.

      He lifted his leg.

      She pushed down with two hands. He lifted his leg. "It was shock. 'Is this real? This isn't supposed to happen,' " Harada recounted to me.

      He called the folks at Emory to tell them the news. He doesn't blame them for what happened next. They tried to temper his enthusiasm. They explained the power of placebo effects.

      "I know what a placebo effect is. I'm not crazy. This isn't a placebo effect," Harada responded.

      "If anyone was more surprised than me, it might have been my doctors," he told me.

      Subsequent tests showed emphatically that what was going on — the mechanism of which is still not understood — was clearly not a placebo. Across a range of tests, there was demonstrative, clear, seemingly miraculous improvement.

      "Every night I went to bed worried I'd wake up and it would be gone, that I'd have made the whole thing up," he said. And every day for two or three months, not only did he wake up and hadn't made the whole thing up, he woke up stronger than when he went to bed.

      "I continued to improve in quantum leaps," he said.

      About a year after the operation, Harada began to notice a gradual decline, a decline that continued until his second operation — though he was still stronger when he went into the second operation than he had been going into the first.

      When I talked to him in October, Harada was pretty sure he was feeling a little better but was tempering his expectations. "It would have been greedy to expect such good results, again," he said.

      Today, though, his staph infection has been cleared up, and there's empirical evidence another miracle is taking place.

      "I'm definitely getting stronger, there's no doubt. Tests are showing beyond a doubt I've gained strength again," Harada said. "I have more energy. My legs don't get tired as quickly as they did. My hands have gotten stronger, again."

      By Oct. 20, Harada was feeling strong enough that he took part in a 2.5-mile fundraising ALS walk in Atlanta.

      "If the walk had been in July, I wouldn't have attempted it," he said. "After a third of a mile, I would have been done. I would have sat down and said, 'Someone come pick me up in a car.' "

      Harada did the 2.5 miles, no problem, still going strong when he hit the finish line.

      Harada said one researcher told him after putting him through his tests on a visit earlier this month that, in Harada's words: " 'If I hadn't seen it with my own eyes, I wouldn't believe it. If I was at another hospital and reading reports about you, I'd say it had to be #$%$.'

      "I've been blessed beyond belief," he said.

      Harada still has ALS. He still knows the likely prognosis is death. For him. But based on what has happened to him, there's hope the prognosis of death won't always accompany the diagnosis. Not now, not that there's clearly some possible mechanism for improvement, something researchers need to understand and refine.

      Feldman is awaiting approval from the FDA for a Phase 1B trial that she hopes will begin soon in Ann Arbor. It involves injecting three patients with 1 million stem cells, double the dose of the first trials.

      If there are no ill effects from doubling the amount of stem cells, a Phase 2 study of 32 patients could begin next summer.

      It's worth repeating Harada's words: "We've got to turn Lou Gehrig's disease into Lou Gehrig's chronic illness."

      Based on what's happened, and what is happening, with Harada, that no longer seems like wishful thinking

    • This is the part i like about the story

      Subsequent tests showed emphatically that what was going on — the mechanism of which is still not understood — was clearly not a placebo. Across a range of tests, there was demonstrative, clear, seemingly miraculous improvement.

      • 1 Reply to fortunehunter58
      • and if the news media is attracted to this story and starts snooping a bit they are going to uncover Eva's recent comments about getting quick approval from the FDA to start trials with Alzheimer's patients, along with her statement that Alzheimer's should be easy compared to ALS. and then they are going to start hearing about possible use for depression and PTSD. this could all unroll very rapidly. wish it had all been approved and out there eight years earlier so it could have saved my friend from ALS. i will never understand why trials have to take so long when they are dealing with terminal diseases.

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