ALS Alert mastheadALS Alert mastheadWinter 2005 - Science. Scope. Speed.

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In This Issue:

A Real Turn-On
Activating a gene—and a new principle—works so well in ALS models, it’s time for a trial.

Awards Night Brings Unexpected Rewards
The 2004 Partners in Collaboration awards ceremony, kicking off the Center’s fourth annual symposium, was full of surprises.

RESEARCH UPDATE:

A Gene Disconnect
Two Packard studies are on track for silencing a familial ALS gene.

 

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Awards Night Brings Unexpected Rewards

The 2004 Partners in Collaboration awards ceremony, kicking off the Center’s fourth annual symposium, was full of surprises. Packard Center Director Jeff Rothstein had just apologized for Shelley Davis’ absence—a missed connecting flight—when she burst into the room to accept an award for Playing to Win for Life Foundation. Since it began, more than two years ago, the foundation (this year’s symposium sponsor) has contributed $465,000 to the Center. Co-founder Bob Basten, who was diagnosed with ALS in 2002, was unable to attend the event, but Davis spoke on his behalf: “Bob and I were seeking an organization dedicated to collaboration. We found it in the Packard Center.”

Photo: Mega-fund-raisers Mike and Ginger Dawley (right to left) celebrate their Partners in Collaboration award with Mike's parents, Judi and Paul Dawley.
Mega-fund-raisers Mike and Ginger Dawley (right to left) celebrate their Partners in Collaboration award with Mike's parents, Judi and Paul Dawley.

Next, Northport Long Island High School students Jonathan Foster, Justin Grasso, Shaun Hager and Chris Lynch came up to accept their award for the successful Hoops for ALS tournament. Their mission began last winter, when science teacher David Deutsch was diagnosed with ALS. Members of the school’s National Honor Society launched a basketball competition and other fund-raisers. In just two and a half months, they raised $32,000. “And these aren’t CEOs!” Rothstein quipped. The young men—uncharacteristically outfitted in suits—said they hope to double that amount by the end of the school year. From his wheelchair, former Northport teacher Chris Pendergast, who has sponsored “Ride for Life” events for ALS research, beamed with pride.

With the same kind of drive, Michael and Ginger Dawley and the Just Cure It Team spent the last 18 months sponsoring mini-marathons, several 5ks and an art show. When Mike was diagnosed with ALS a few years ago, family, friends and co-workers created Just Cure It. Since February 2003, the Center has received 368 gifts in Dawley’s honor, totaling more than $30,000. In a poignant acceptance speech, Dawley exclaimed, “With a two-fisted grip, you’ve got to grab your friends, run together and cure this thing!”

Following the awards presentation, Rothstein shared a final surprise: the Fran Delaney Foundation’s check for $50,000 to the Packard Center (see A Friend Indeed: Down but Not Defeated).


Next > A Gene Disconnect
Two Packard studies are on track for silencing a familial ALS gene.


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Special Features:

Vantage Point
With a push from new technology, we’re going to start rearranging the haystack so the needle becomes obvious.

On Center
Constellation Energy Classic: Way Above Par; Bruce's Favorite Shirt

Site Delight
Just as the big bookstores have a shelf of titles that staff recommend, we've assembled a list of Web sites we find especially useful.

A Friend Indeed
Down but Not Defeated

The Big Board
In the Aftermath

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