‘Power for the Journey’ Gives Back to ALS Community

by Bill Norman on Fri, 2010-07-23 14:18

Part support group, part fundraising effort, this group seeks to fuel ALS research while offering comfort to those who are coping with the disease

At a Power for the Journey Walk they hosted in April are, from left, Jackie Maxwell, Joyce Jordan, Anne Philson, Marlene Zaleski and Joyce Robichaud.
Article Highlights:
  • Five women whose husbands died of ALS have formed an ALS support group, Power for the Journey, which reaches out to others coping with ALS and raises funds for MDA’s Augie’s Quest research initiative.
  • One of the five, Marlene Zaleski, has written a book about her husband’s journey with ALS, For the Love of Pete. Proceeds go to Augie’s Quest.

When you’re hoping to earn $14, but wind up making $20 instead, that’s good reason to be happy.

Marlene Zaleski and four of her friends found themselves in just such a situation, except the $14 was $14,000, and the final tally from their ALS fundraising run/walk in Cookeville, Tenn., on April 24 was not $20 but $20,118. All proceeds from the event went to MDA’s Augie’s Quest ALS research effort.

Attribute their success to “Power for the Journey,” an ALS support group that Zaleski and friends formed with help from MDA after learning they had a powerful common interest: Each of their husbands had died of complications from ALS.

Power for the Journey

After Zaleski’s husband Pete died in 2003 at age 71, she by chance learned about Joyce Robichaud from a mutual acquaintance who is a physical therapist. The therapist couldn’t divulge their names, for reasons of confidentiality, but did provide enough information to get the two together. Gradually they met the rest of their ALS survivors’ quintet, first through e-mails and later face-to-face.

Originally intended as a family memior, Marlene's project evolved into a published book.

“We had been exchanging e-mails for quite some time without actually knowing each other. [When] we’d eventually meet, we’d simply say, with deep emotion, ‘I’m so glad to meet you,’ Zaleski recalled. “In the beginning we did a lot of crying and laughing and saying things we would not have said to anyone else.

“After a while we realized we wanted to create a support group. We contacted MDA, and the rest is history.”

Power for the Journey members work hard to focus the public spotlight on ALS and to raise money for ALS research. In addition, they search out and comfort (“adopt”) others coping with ALS.

Zaleski also has published a book about her family’s experiences with ALS called For the Love of Pete. Originally intended as a collection of photos and memoirs just for family members, the project evolved into a poignant portrait of Pete and the family’s interactions with him as he lived with ALS.

In deciding to publish the book for a wider audience, Zaleski said, “I was amazed at how many people are not aware of what ALS is. Pete and I went to a movie about Lou Gehrig, but it was a romance. I really had no idea what the family [of a person with ALS] goes through. I want everyone to know how people suffer with ALS — but that there’s hope if they’ll support ALS research.” 

For the Love of Pete can be ordered by e-mailing Zaleski at fortheloveofpete@frontier.com.  Checks for $20 can be made out to “MDA’s Augie’s Quest.” Send an additional $3 to Zaleski to cover postage and packaging costs.

The cost-conscious author said that as of July 2, book sales had raised a total of $11,865, with every penny going to Augie’s Quest.

“I’m not interested in the money, but I am very much interested in the salvation that money will some day bring to others,” she said.

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