Ice Bucket Challenge raises ALS awareness

LAS VEGAS -- The ALS Ice Bucket Challenge has been popping up on social media. The challenge involves getting drenched with a bucket of ice water for a good cause.

The challenge is to create awareness and raise money for ALS, also known as Lou Gehrig's disease.

The ALS Association which is headquartered in Washington, D.C. reports nearly $23 million being raised this year from ice bucket challenge donations. Then there's the ALS Association of Nevada which is a totally separate entity. The executive director says the annual budget is about $200,000 and the local organization doesn't get any money from the national organization. 

"The beauty of what we do is that every dollar raised stays in Nevada," said April Mastroluca, the executive director of ALS Nevada.

Because of the slim budget, Mastroluca is the only full-time employee. There is also a part-time coordinator to help patients living with ALS and their families. They are the only two in the state.

"Our entire existence is based on fundraisers and individual donations. We don't get any government money. We don't get any money from outside organizations," Mastroluca said.

While the Washington, D.C. based ALS Association reports raising nearly $23 million from the ice bucket challenge,  Mastroluca says none of it helps local families directly. That money goes toward research and services but no support groups in Nevada.

ALS Nevada does run two support groups, helps coordinate care and provides medical equipment for 70 to 80 families a year.

"It's so incredibly unimaginable how much people need help right now with this disease," said Jennifer Behan, who lost her husband to ALS.

Behan's husband died in 2010. He was just 41 years old. ALS of Nevada helped the Behan family through that devastating time.

While Behan supports the ice bucket challenge, she hopes more people think about donating their dollars locally.

"The money that comes in can really help a family maybe see a little bit of light at the end of the tunnel with the support that they need," Behan said.

She hopes when people do the ice bucket challenge, they learn something about the terminal disease. For example, 5,600 people in the U.S. are diagnosed with ALS every year and the life expectancy is two to five years.

"I know with my girls, my girls are so excited that this challenge is out there and they're, like I wish this was around when dad was living."

If you want to make a donation, you can click here for the local organization.





 


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