Dee Chiplock: Speaking Up is Second Nature to Michigan Mom with ALS

By: Gary Wosk

Speaking up about ALS comes as naturally to Dee Chiplock of Saginaw, Michigan as taking center stage on TV’s “American Idol” and belting out a tune.

Dee
“Extremely compassionate” is how Dee Chiplock, accompanied by husband Jerry and sons Evan (green tie) and Sean, describes New York Senator Hillary Clinton (left).

The cadence and lyrics may vary, but the message spoken by Chiplock is always the same: more needs to be done to find a cure for ALS and improve patient care.

Chiplock, the 25th person in her family to contract ALS, and the longest survivor, eschews luxuriating under the sun on some Caribbean or South Pacific island, doing lunch at the Eiffel Tower or taking a majestic Alaskan cruise.

Her outspokenness, which has earned her the reputation as “black sheep” of the family, rivals that of the late sportscaster Howard Cossell, who also “told it like it was,” however, her long dormant sense of humor has emerged to balance out the scales.

This 40-year-old ALS foot soldier constantly sets her sights on more important destinations such as fulfilling a wish to return to Washington D.C., where she met with key legislators last May during The ALS Association’s National ALS Advocacy Day and Public Policy Conference.

It is in this forum that Chiplock sees herself flourishing in as an ALS advocate. She believes her mission is to re-tell her family’s story of ALS — a disease that has come calling on three generations — as many times as possible in order to raise public awareness, and increase the likelihood of funding for research and improved patient services.

ALS is considered “familial” when it occurs more than once in a family lineage, but only accounts for 5% to 10% of all cases in the United States.

“I have tried very hard to be an advocate, have meetings and stay in touch with members of Congress and state representatives for policies they could work on here,” said Chiplock, born and raised in Buffalo, New York. “When I am in front of people I tend to be very effective.”

She also sees herself as a catalyst for reforming certain public policies that raise her ire. Nothing gets her to the bully pulpit quicker than such topics as custodial nursing care and health insurance.

“I just want 10 to 15 minutes to address the entire U.S. Senate. I want to tell my family’s story, my personal story, and hope it awakens some people, tugs at some heart-strings and minds, and that they decide to make some changes regarding ALS funding.”

Chiplock’s experience on Capitol Hill last spring capped more than two decades of relentless Chiplock ALS Advocacy efforts that began in 1980.

“Honestly, ALS Advocacy Day was a wonderful experience for me, my husband and kids,” said Chiplock, who, until ALS struck in November 2003, was a coach for the scholastic “Destination Imagination” team.

During Advocacy Day, Chiplock, accompanied by another ALS patient from ALSA’s West Michigan Chapter, lobbied lawmakers to support such ALSA causes as continuing Department of Defense funding for ALS research, removing the five-month Social Security waiting period for ALS patients, and increasing funding for ALS research at the National Institutes of Health.

“Through the efforts of people like Dee, we are raising awareness of ALS in the halls of Congress and making a difference in the lives of so many families impacted by this disease,” said Stevan Gibson, ALSA’s vice president of Government Relations and Public Affairs. “Thanks to Dee ’s perseverance and that of other ALS advocates, many members of Congress now have a better understanding of how these issues truly impact people with ALS and their families.”

Chiplock was particularly impressed by senators Carl Levin (D-MI) and Hillary Clinton (D-NY) with whom she shared “face-to-face” time. Meetings also were held with Sen. Debbie Stabenow (D-MI), and representatives Sanda Levin, Candice Miller, Nick Smith and John Dingell (D-MI), and representatives Mike Roger and Dave Camp (R-MI).

“Dee's story is an extraordinary one,” said Levin. “She is a woman of great courage and strong conviction. I’m glad that I had an opportunity to meet her and to see firsthand what an outspoken and effective advocate she is in the fight against ALS.”

Getting the word out about ALS is old hat to Chiplock and her family. From the time her mom passed away from ALS in 1980 at the age of 35 she has been on the constant go as an ALS advocate.

She has volunteered for support groups, coordinated donations of blood and tissue to researchers and “hounded” them on “where we are at, what are we working on,” raised money for research and initiated letter-writing campaigns directed to the movers-and-shakers of the nation. These and other efforts have greatly heightened ALS awareness in Michigan.

Chiplock became involved with ALSA’s West Michigan Chapter in December 2003, one month after receiving her ALS diagnosis. Since then, she has participated in the chapter’s Caddy/AM golf tournament, the Walk to D’Feet ALS®, and monthly support group meetings. At the Walk, many ALS patients, intrigued by her story, introduce themselves to Chiplock.

“She’s very articulate, she can articulate the nuances of the disease and the different drug trials she’s undergoing in a way lay people can understand, said Tom Farley, executive director of ALSA West Michigan chapter in Grand Rapids.

“At the golf tournament, the wife of one of the players said ‘that was the first time she had been in a room filled with players and there was silence.’ They listened to every word she said. It was an amazing thing,” remembered Farley.

Chiplock also is a great risk-taker who prefers to confront the truth head on. In 1993, she helped ALS researchers reach a major breakthrough. She became the first person in her family to take a Northwestern University blood test for the defective ALS “familial” gene. Chiplock was seven months pregnant with a second son when informed she tested positive. A sister, Anita, now 38, also tested positive.

As committed as she is to remaining a major advocate in the fight against ALS, those efforts will always take backstage to the needs of her family. She wants to spend as much time as possible with her husband Jerry, a hospital human resources manager to whom she has been married to for 16-l/2 years, and their two sons, Sean, 14, and Evan, 10.

Cuddling with her two children, who are both active in basketball, swim teams and school plays, rates as the most important highlights of her days as well as spending Mondays, Friday, and weekends with her husband.

“I cannot imagine my life without Jerry and the boys,” said Chiplock.

Despite the immediate and extended family’s long history of ALS, Chiplock put all of that aside to complete her studies in organizational psychology and business management — at first she wanted to be an ALS researcher, but “mathematics did her in.”

She was also able to relegate ALS worries to the recesses of her mind and move to New York City to work for an advertising agency, and eventually MCI as an account executive, a career she walked away from in 1995 due to a connective tissue disorder.

Without the intervention of her grandmother, life would have been a more difficult road for Chiplock to navigate. When worries of ALS consumed her as a young woman, grandmother was there to admonish, do not live life in a “what if” mindset. “When you know better, you’ll do better.”

Another great source of contentment in Chiplock’s life was her mom, Mary Ellen Crawley, a gifted painter and crafts person.

“My mom was one of those women who, when she walked into the room, everyone, men and women, wanted to be around her. She made people feel great about themselves and always showed a tremendous interest in others.”

Unlike her parent’s home, where ALS was never mentioned, Dee and Jerry Chiplock are quite open with their children about ALS and are preparing them for an unknown future. According to family statistics, the disease affects women nearly eight times more than men.

“They know everything,” said Chiplock. “My kids know how to take care of themselves, based on what the researchers have told us. I’m also doing my level best to educate my husband, so the boys will continue to receive the best possible preventive care that they can.”

Chiplock is determined not to allow ALS to put her on the sidelines while so much remains to be accomplished.

“If I can help raise awareness and thereby increase funding opportunities, that would be fantastic. Until we find a cure for ALS we have to provide care for the people who have it now.”

* Dee Chiplock passed away in May 2005.

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