DES MOINES, Iowa - It’s the non-profit organization receiving all of the attention. The ALS Association has raised $88 million for research towards finding a cure for the disease since the “Ice Bucket Challenge” began.
Donations are pouring in locally as well. The Iowa ALS chapter has raised more $163,000 this August compared to $36,000 in August of 2013.
The boom in donations and awareness is good news for Sarah Lettow, who learned the hard way that the letters ALS aren't just a diagnosis, they're a death sentence.
"With ALS, every day is worse than the day before. There is no remission and there is no getting better than the day before,” said Lettow, the development director for the ALS Association’s Iowa chapter.
In 2010, Lettow learned her mother was suffering from the disease.
"She always told she felt like she was falling in on herself. She couldn't sit up straight anymore,” Lettow said.
The doctors said she had 3 to 5 years, but she passed after only six months. Now fundraising for the local ALS chapter, Lettow is seeing first-hand the hope the “Ice Bucket Challenge” is bringing people affected by the disease.
Unfortunately, non-profits know there are only so many donation dollars to go around.
"One in three people die from heart disease. If you haven't been affected by heart disease, you know someone who has,” said Kassi Wessing, Communications Director for the American Heart Association of Central Iowa.
"The statistics tell us that one in eight women will be diagnosed with breast cancer,” said Roger Dahl, Executive Director of Susan G. Komen Iowa.
Iowa's top two killers are heart disease and the various forms of cancer.
Both claimed more than 6,000 lives in 2013 while no other disease accounted for more than 2,000 deaths. With an average of 83 deaths a year, ALS doesn't crack the top 10.
Representatives from the Susan G. Komen Foundation and American Heart Association say private donations haven't been effected since the “Ice Bucket Challenge” began, but both rely more on fundraising events.
“The Race for the Cure represents almost 80% of the funds we take in,” said Dahl.
"Locally, our biggest fundraisers are our Heartwalk, Heart Ball, and Go Red for Women Luncheon,” Wessing said.
The ALS Association has a walk of its own in October.
"It puts the desire to donate to a charitable organization at the front of people's minds,” said Lettow.