ALS ADVOCACY

ALS ADVOCACY
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, July 2, 2009

The CBS News Story on ALS by Katie Couric Ran Tonight

CBS Evening News http://www.cbsnews.com/

http://www.cbsnews.com/stories/2009/07/02/eveningnews/main5130584.shtml?tag=cbsnewsTwoColUpperPromoArea


Watch CBS Videos Online

By Katie Couric


(CBS) Lou Gehrig might have considered himself lucky. But he couldn't have imagined that seven decades after his emotional farewell, there would still be no treatment for ALS.

"When I was initially diagnosed, the doctors, three different doctors, told me the same thing: 'There's nothing we can do. Go home and die,' basically," said Philip Carlo, an ALS patient.

But CBS Evening News Anchor Katie Couric reports that science may finally be making the kind of progress that would have made the iron horse proud. "Much as those Yankees featured some of the greatest teamwork in the history of baseball. We have assembled a dream team of scientists and clinicians to work on the problem," said Valerie Estess, co-founder, Project ALS. Once competitors, scientists from both Harvard and Columbia are working together - with skin samples from both patients and healthy donors to help doctors figure out what causes ALS. "Well, for the first time we can now have billions of these cells to study in the laboratory and ask why it is that they get sick," says Dr. Kevin Eggan of the
Harvard Stem Cell Institute.

In ALS, nerve cells - called motor neurons - become incapable of sending messages from the brain, to the spinal cord, and on to the muscles - resulting in paralysis and ultimately death. "You're alive. But you watch yourself die, and you can't do anything about it," said Carlo. Rather than retrieving the motor neurons from the spinal cord of patients, a procedure that's far too risky, scientists are creating them from scratch. "Skin cells are very accessible, but they have nothing to do with the disease. So that's why we've had to find out a way of turning the skin cells into motor neurons," said Chris Henderson, Do-Director, Motor Neuron Center, Columbia University.

Couric decided to donate some of her skin to science. A tiny piece of skin is put it in a Petri dish, where cells then multiply. They are genetically modified to behave like embryonic stem cells - capable of becoming any kind of cell in the body. "They have all the characteristics of embryonic stem cells but they don't come from the embryo," said Dr. Eggan. They're then able to manipulate those very malleable stem cells to become motor neurons - enabling researchers to do what's never been done before: study the progression of ALS under a microscope.

"We want to compare the motor neurons from ALS patients with the motor neurons from healthy individuals. And through that we really do believe that we'll come to a fundamental understanding of what leads to ALS," said Henderson Which in turn, should lead to more effective treatment.

Carlo said the research is essential, "we have light at the end of the tunnel. And that -you can't ask for more than hope." Hope, that even the luckiest man on the face of the earth never had. At the end of his speech, Gehrig said, "I might have been given a bad break, but I've got an awful lot to live for. Thank you."

More about MLB and ALS here
More about Project ALS Here

3 comments:

  1. Is there anyway to have this procedure tried on a person with ALS right now? My Dad has the Bulbar form of ALS which starts with speech and then the tongue, throat and then moves down to the arms legs etc. He really has nothing to loose because he is getting worse by the day. He has went from 205 pounds to 159 pounds and can't speak, eat or control his saliva and now it has started in his arms, legs and neck.This disease is the most cruelest disease ever as I'm sure others experiencing it knows already. Not being able to help your loved one is the most aweful feeling!! If anyone has an answer to my question please let me know!!!!!

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  2. K Riley, I would recommend contacting Project A.L.S. Theirs was the science that was being explained by Katie Couric. At www.projectals.org there is a Contact Us toward the right top of their home page.
    God bless you and your Dad.

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  3. My grandfather just passed away this past November and I have started fundraisers and issued a proclamation declaring the month of May in my town ALS awareness month. We need to continue the fight! He had a track and was hooked up to a respirator his last months. He was 74 and lived a terrific life that I know very well he'd help fight for other people just like I am for him!

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