ALS Seminar

Saturday, 3 May 2008

This morning, Chase and I went to the annual ALS Seminar. We went to man the support group booth. Many people, even complete strangers, came by to play with the baby as he was crawling all over the place. I sat there and chatted with people who came by, and kept forgetting to press "play" on the DVD player that was showing a segment of what the ALS support group is all about.

Because I was sitting in a side room, along with all the other vendors, I missed the keynote speakers and presenters.

This article was recently printed in the community newspaper, Midweek. It features a local guy who is researching to find a cure for ALS. So, in honor of ALS awareness month in Hawai'i, please read on.

Pushing To Find A Cure

Wednesday - May 06, 2008
By Alice Keesing


Dr. Justin Ichida and his colleagues won't give up on finding a cure for amyotrophic lateral sclerosis.
It was the book Jurassic Park that did it. Justin Ichida was a teen growing up in Hawaii Kai when he read Michael Crichton's book, and his imagination was captured by the idea of regrowing dinosaurs from old bits of DNA. These days, that concept is edging more toward fact than fiction as Ichida - now a post-doc at Harvard - works in a lab where they throw around ideas of reviving a woolly mammoth.

The woolly mammoth proposal is no joke at the Harvard Stem Cell Institute, but the current, serious mission is finding the cause and cure for Lou Gehrig's disease, also know as amyotrophic lateral sclerosis.

The Hawaii-born Ichida returned to the Islands this month to talk about the research at the Muscular Dystrophy Association's eighth annual ALS seminar May 3. "A cure has been pie in the sky

for so long that people tend to lose faith," says Jennifer Li, MDA's health care services coordinator. "But here is someone, from here, who is doing something about finding that cure."

Lou Gehrig's disease is a devastating disorder that destroys the nerve cells that control voluntary muscles. Muscles grow progressively weaker until they are paralyzed, and death usually occurs within three to five years. It's estimated that as many as 30,000 Americans have the disease at any given time - right now, Hawaii's Muscular Dystrophy Association is helping 47 families whose lives have been rocked by the disease.

Ichida himself remembers his Iolani PE teacher, former UH volleyball player Ann Kang, who died from the disease.

"Mrs. Kang went from shooting basketballs to being in a wheelchair in a year," he says. "It's just devastating, and it's devastating because you know the chances of survival are just ... minimal."

It's for people like Kang that Ichida and his colleagues "are just putting the pedal to the floor" to push their research onward.


Dr. Ichida and colleagues are working on an alternative method to bypass the use of controversial human embryonic stem cells
Working in Kevin Eggan's lab at the Harvard Stem Cell Institute, the 30-year-old Ichida is in the thick of the cutting-edge and controversial use of human embryonic stem cells. Stem cells have huge potential in medical research because they have the ability to develop into many different types of cell, be it muscle cells, red blood cells or brain cells. The thrust of the work in Eggan's lab is to create patient-specific stem cells - cells that contain the DNA of each individual patient.

Initially, the lab began by injecting the patients' DNA into human embryonic stem cells. In the last year, however, they started work on a new method that allows them to bypass the use of those stem cells taken from human embryos. Using viruses, they can inject a cocktail of four genes into an adult cell of the patient -a skin cell, for example. This gene cocktail changes the skin cell into the equivalent of a human embryonic stem cell.

"What we can do now is take a cell from a patient, reprogram it into a stem cell using this method and then differentiate that into the specific types of cells that are associated with ALS, like the motor neurons or the muscles or the supportive cells in the central nervous system," Ichida explains. "And each of these cells will have the DNA of the person who has the actual disease."

This allow researchers to watch, in a petri dish, how the disease unfolds, giving clues to what causes it and how to treat it.

The cells are also an invaluable tool for testing new drugs to combat the disease. And, ultimately, Ichida says, they could lead to a cure where healthy cells are injected into the patient. Because the cells contain the patient's own DNA, there are no problems with transplant rejection.


When he's not working at the Harvard Stem Cell institute, Ichida, an Iolani graduate, plays guitar in a rock band
The inevitable question is, how long will this take?

It's a question that Ichida doesn't shy away from even though he knows the answer might not help people who have the disease now.

New drug testing should begin in the next few years, he estimates, with some effective treatments coming on the market in around 10 years. The cell replacement therapy is a longer-term option.

"Unfortunately, ALS, it's fast, so people that have it now we may not be able to help as much as we want to," Ichida says. "It's a tough thing, but I can assure you that we are working as hard as we possibly can."

For someone who works on the cutting edge of research, Ichida is amusingly non-committal about his early prowess in science. Perhaps he was an above-average student in science at Iolani, he says, but growing up, he was just as likely to be playing basketball or football or soccer or doing martial arts. He danced hula at Iolani - and even won an award. And music has been an important part of his life since he was 15. These days he plays guitar in a band called Surrogate Superstar, which rocks it out in the style of Jimi Hendrix and Led Zeppelin.

But during the day, that lab coat comes back on and it's back to the business of finding a cure.

"I really can't think of anything else I'd rather be doing," he says. "Right now, it's just an amazing time in this field."