ALS family speaks out about "Ice Bucket Challenge" - KWWL - Eastern Iowa Breaking News, Weather, Closings

ALS family speaks out about "Ice Bucket Challenge"

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WAVERLY (KWWL) - The Iowa Chapter of the ALS Association estimates there are only 250 Iowans with ALS or Lou Gehrig's Disease.

People with ALS will often times be able to think clearly, but not be able to communicate or move the way they'd like to because the disease leaves the mind alone, but kills off the muscles.

The ALS Association reports it has received $41.8 million in donations compared to the $2.1 million they had around this time last year.

The Association says donations have poured in from existing donors and 739,275 new donors, and they attribute it to the "Ice Bucket Challenge."  

KWWL reached out to the ALS Association to find out how important the donations are and where the money will go, but our media request was not returned on Thursday.

Online, the Association says its mission is to help people with ALS and their families while focusing on research, treatments and eventually find a cure.

For Margery and Phil Hibbard of Waverly, the "Ice Bucket Challenge" videos hits close to home and offers them a sense of hope.

In February, Phil was diagnosed with ALS. 

The 72 year-old says he has lost about half of the muscle strength in his legs since his diagnosis.

"It's been very rough beyond what you can imagine," said Margery, his wife of 50 years. 

"First of all it's such a shock, and then the bigger shock is seeing how fast his muscles are failing," she said.

Phil said ALS does not run in his family.

"It can happen to anyone," he said.

He said the scariest part for him is that he'll end up with a mind that works, but a body that won't do anything.

"That's a pretty scary thought," he said, adding that he fears the day he won't be able to tell his family he loves them or hold any of his 10 grandkids.

The Hibbards said their friends, family, church and community has helped them adjust to life with ALS.

To learn more about ALS and the "Ice Bucket Challenge," click here: http://www.alsa.org/
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