ALS Alert mastheadALS Alert mastheadWinter 2006 - Science. Scope. Speed.

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In This Issue:

From Tomatoes to fALS: Will Antisense Make Sense?
Don Cleveland ’s animal studies gave antisense the green light.

Buoyed by Boye’s Gift
“It’s the purest type of philanthropy—giving to someone you trust.”

Lou Gehrig the Man
Jonathan Eig offers insight into the baseball legend who made ALS famous.

RESEARCH UPDATE:

The Enemy Without
New evidence that what’s outside motor neurons could be the last straw.

 

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A Friend Indeed

Music from the Depths

“Sweet miracle of love that lies beyond each memory,” sings Cindi, in her tribute to husband Norm.
“Sweet miracle of love that lies beyond each memory,” sings Cindi, in her tribute to husband Norm.

As a child, Oklahoman Cindi Phillips sang at school and church. But in 1988, a religious epiphany inspired her to pick up her guitar and compose, which became a favorite pastime.

Moving to Houston, Phillips worked as a temp at the same firm, by chance, where a charismatic fellow named Norm designed printed circuit boards. “He was so smart and funny,” recalls Cindi. The two married four years later, raising Cindi’s daughter from a previous marriage and their son, now 11. Eventually the family moved just outside Philadelphia.

Sixteen years later, Cindi is still amazed by Norm’s intelligence and wit, traits especially helpful in December 2004, when Norm, at 47, was diagnosed with ALS.

Cindi recalls how they joked when Norm’s left biceps started to twitch—from a pinched nerve in his neck, they’d assumed. Within days, numbness in his arm and slurred speech followed.

Tests in Pennsylvania confirmed the diagnosis. But after hearing the news, Norm, a computer scientist-engineer at Boeing, went right back to work. “He wanted things as normal as possible, especially for our son.” Cindi says. Even now, with little function in his hands and difficulty speaking, Norm heads to the office once a week. Other days, he telecommutes from home. And he still organizes events for his college fraternity, which he’s chaired for 10 years.

Cindi, meanwhile, manages a dental office. She continues to find solace in her faith and her music. And, Norm, ever-encouraging, nudged Cindi to record her songs. After writing her last one—about living with ALS—Cindi decided to earmark profits from the CD to the Packard Center, where Norm had a medical workup.

Cindi’s “Trust You Collection,” debuted last fall. At once soulful and romantic, the CD has sold more than 600 copies, raising more than $3,000 for Center research. No one is more surprised than Cindi. “There’s been an outpouring of affection,” she says. Most rewarding, she adds, is seeing how the songs resonate with other people going through difficult times.

To learn more about the CD or to place an order, visit www.cindiphillips.com.

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Special Features:

Vantage Point
At the Center, we've always put our basic studies and therapy searches on equal pedestals because it can't be any other way.

On Center
New Face to Keep Pace

From the Clinic
Q & A with Jennifer Heidler, clinical psychologist

A Friend Indeed
Music from the Depths

The Big Board
Pride of Baltimore

Make a Donation


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