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Sunday's Walk to Defeat ALS in Cedar Rapids is a family affair

'We're walking for Mom'

ALS Association Iowa Chapter photo

Walkers take to the Kingston Stadium track for the 2018 Cedar Rapids Walk to Defeat ALS. The 2019 walk on Sept. 22 will be used for research to find a cure to the progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord as well as provide services to people with ALS and their families.
ALS Association Iowa Chapter photo Walkers take to the Kingston Stadium track for the 2018 Cedar Rapids Walk to Defeat ALS. The 2019 walk on Sept. 22 will be used for research to find a cure to the progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord as well as provide services to people with ALS and their families.
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UPDATE: The Walk to Defeat ALS in Cedar Rapids this Sunday has been moved to the Cedar Rapids Ice Arena due to weather.

CEDAR RAPIDS — When Denise Hoffman and her family members start the Cedar Rapids Walk to Defeat ALS at Kingston Stadium, it will be personal.

“We’re walking for Mom. She has ALS,” Hoffman explains.

ALS — amyotrophic lateral sclerosis — is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. There is no cure.

More than 300 people are expected to participate in the walk Sept. 22, according to Lauren Reinhard of the ALS Association Chapter of Iowa. There will be 47 walkers on Rally for Rita, the team walking for Rita Staebell, 71, Hoffman’s mother. Most of them will be family members from Hoffman’s 10-year-old nephews “to people older than my parents.”

It will be the first year Hoffman and her family walk as a team.

“Last year, it was kind of new to us,” said Hoffman, whose mother was diagnosed in May 2018.

Staebell wasn’t the first family member diagnosed with ALS. Her brother and a cousin both died from ALS.

Although a new team this year, Rally for Rita already has raised more than $12,000, Reinhard said. Hoffman’s dad, Denny Staebell, donated billboard space in Cedar Rapids to the ALS Association Iowa Chapter to promote the walk.

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Most of the Staebell-Hoffman team are from Waterloo and Cedar Rapids. Others will visit from Florida, Nebraska and elsewhere to participate.

They won’t be the only ones making a long-distance trip to join the walk.

Tim and Lisa Wilson, formerly of Waterloo but now living in Pennsylvania, will make their annual trip to join the walk. The Wilsons raised $3,300 in 2011, the first year they walked. They’ve already raised more than $16,000 on behalf of Team Phil this year. It’s the seventh year the team has raised at least $15,000. Overall, Team Phil has raised $125,000 for the Iowa chapter.

Team Phil and Rally for Rita have raised just over 35 percent of the chapter’s $80,000 walk fundraising goal, Reinhard said.

The chapter was formed after Doug Hawley was diagnosed in 1999 with ALS, commonly known as “Lou Gehrig’s disease.” His friends came together to support Hawley and his family financially. They formed Hawley’s Heroes, which, after he died in 2011, they then expanded their efforts and became the Iowa Chapter of the ALS Association national organization.

According to the Iowa chapter, 86 percent of the funds raised will stay in Iowa. They support an equipment loan program, multidisciplinary clinics, family assistance programs and support groups and outreach.

In addition to raising funds, Hoffman enjoys the walk for the camaraderie.

“It’s kind of nice to see how many people are supportive and care, and love my mom,” Hoffman said.

She also finds encouragement in knowing the funds raised will help others with ALS in the future.

“There’s no cure. There’s no help for my mother,” she said.

The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

For more information on ALS, visit http://webia.alsa.org/.

Comments: (319) 398-8375; james.lynch@thegazette.com

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