ALS Alert mastheadALS Alert mastheadSpring 2003 - Science. Scope. Speed

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In This Issue:

Drug Trinity Shows Unexpected Strength
Jean-Pierre Julien—his “cocktail” does wonders for ALS mice.

From Iceland: A New Way to Decode ALS Genes
In Iceland, a country of roughly 300,000 citizens, ALS is pretty much unknown. If you wanted to find genes tied to that disease, it’s an unlikely spot for a search. But from that country may come, if not the genes themselves, a superior way to track them down.

Getting to the
Heart of It

With ALS, many of the simplest questions remain unanswered. ‘That just won’t do,’ say Center scientists.

One Step Closer to the Bedside
The Basics Bolster Stem Cell Therapy.

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Ride for Life Keeps Center Rolling

photo - Pendergast: feisty man with a feisty plan.  
Pendergast: feisty man with a feisty plan.
   

“Even if we don’t always get to choose our parts—if all the world’s a stage—we can decide how well we act them,” says Chris Pendergast, the teacher who started the ALS nonprofit, Ride for Life.

This year, Ride donated $55,800 to Packard Center research, sure evidence that someone’s part is well played. Most likely, it’s Pendergast’s.

The man is adept at turning around a raw deal. As a child, he lived in a Long Island bungalow without electricity, the youngest in “a very dysfunctional” family. “But I was blessed with a mind that would let me escape,” he says, and in studying science, Pendergast found both stability and beauty.

In time, he was teaching his fourth graders how to close their eyes and tell if a forest was evergreen or leafy based on the sound of the wind. The methods he used made him a leader in regional education for gifted students. He was nominated N.Y. State Teacher of the Year, got grants for innovative teaching programs and set up an award-winning model environmental lab for kids.

The months after Pendergast got his ALS diagnosis in 1993, he says, were a dark hole he slipped into before making a semblance of peace with the disease. “I’ve come to see ALS as an entity; it just happens to occupy the same space I do.”

In deciding to go by wheelchair from New York City to Washington—the first Ride for Life in 1998—Pendergast hit on a way to raise awareness that stood out for being patient-centered. Some saw the trip he and a handful of ALS patients planned as risky. He saw it as empowering: “I’d rather be plastered by a Mack truck while supporting a good cause than languishing somewhere.”

Ride for Life took off, and now the all-volunteer organization educates about the disease while it gathers support for patient services and research. “It’s a way ALS patients can fight while maintaining their dignity,” says Pendergast.

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Special Features:

Vantage Point
With approaches to ALS therapy, progress seems to move one step forward and a half step back.

On Center
Runners, Walkers Make Feet Fly to Help the Center.

Rich Soil for a Blooming Friendship
“About six years ago, I ran into Laura and I could tell something wasn’t right,” says Coleman, who now directs the New York State Trial Lawyers Association. “When I heard later she had ALS, I felt a bit strange in writing a personal letter out of the blue, but I sent it anyway.”

Insider's View
Noah Lechtzin, M.D., is a Hopkins pulmonologist who sees ALS clinic patients regularly.

From the Clinic
Lora Clawson, M.S.N., C.R.N.P., manages Johns Hopkins’ ALS clinic, including its clinical trials. In this column she answers typical patients’ questions.

A Friend Indeed
Ride for Life Keeps Center Rolling.

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