ALS of Nevada offers help to families dealing with disease

ALS of Nevada treats 63 of the estimated 225 ALS patients living in Las Vegas. Founded in 1998, the nonprofit organization provides home visits and a respite program.

"This is just a horrible, horrible disease," says Executive Director Megan Testa. "Imagine, every day, waking up and being able to do one less thing."

Amyotrophic lateral sclerosis, better known as Lou Gehrig's disease, attacks the nerve cells that control muscles. The nerves deteriorate, causing the muscles to follow.

"Every initimate detail we take for granted has to be done by somebody else for us," Testa says.

And that's only the toll taken on the victim. According to Testa, $250,000 per year is required to care for each ALS patient.

"And that's with Medicare," she says.

But ALS of Nevada's annual budget is $450,000 -- not even enough for two patients.

"A lot of what we do is just guiding the family on what to expect next -- put out fires, help them get to doctors, and help with different symptoms," Testa says. "We can't afford to give them money. But if they're having trouble swallowing or they're losing a lot of weight, we guide them toward getting a feeding tube. If their voice is going, we help them get a communication device."

ALS of Nevada -- which employs two full-time and two part-time staffers -- also maintains a small equipment loan closet.

"We have everything from canes to $40,000 wheelchairs that's all been donated to us by other patients," Testa says.

The cause of ALS is unknown and there is no cure. Life expectancy is from two to five years from diagnosis.

"Sometimes I think it's worse for me (when) we actually get a new patient than when we lose one," Testa says. "A lot of times, by the time we lose them, you're just praying that they go -- because it's so hard on them and their families."

For more information, call 777-0500.