ALS of Nevada: ‘We’re Just Going Week by Week’

Nonprofit organization struggles to find money to remain open

ALS of Nevada helped make a trying time easier for Renee Flood. In 2008, the 48-year-old’s mother, Kathy, 66, was diagnosed with Amyotrophic Lateral Sclerosis, a.k.a. Lou Gehrig’s disease. Renee, who lost her job around the same time as the diagnosis, had no money, no resources and didn’t know where to turn.

She learned about ALS of Nevada through her mother’s neurologist. The nonprofit organization helped the women get the medical care and support they needed. But now, because of funding shortages, ALS of Nevada risks closing.

“Without ALS of Nevada, I don’t know what I would do,” Renee says. “I wouldn’t know where to begin getting the stuff that I need when I need it.”

She’s not alone. The nonprofit organization, the only one in Nevada that helps ALS patients and their families, is a one-stop shop for support, educational resources, donated medical supplies and a monthly health-care clinic. The organization, which has an annual budget of $385,000, helps pay for the medical care of patients who have the degenerative disease that affects the central nervous system. And that’s no small feat, considering medication alone can cost nearly $1,000 per month for a patient.

Kathy, who died on June 29, received a variety of products from ALS of Nevada, including an electric scooter and items to help make her bathroom more accessible.

But unless the clinic begins seeing an infusion of donations, it could all end. The state’s funding for the organization has been eliminated, resulting in the loss of $121,000 that has gone to providing in-home care, and donations are down drastically because of the economy. Executive Director Megan Testa says the clinic is barely getting by. “To tell you the truth, we’re just going week by week right now,” she says.

Still, Testa is determined to keep the clinic open and is doing whatever is necessary to make that happen. In mid-June, ALS of Nevada laid off two employees—a nurse and a social worker—leaving only Testa to run every aspect of the organization.

The Cleveland Clinic Lou Ruvo Center for Brain Health has been an enormous help, providing a rent-free office in the facility for ALS of Nevada since October. Maureen Peckman, chief emerging business officer with Cleveland Clinic Nevada, says the medical center is fortunate that it’s able to help out.

“We are pleased to be working with ALS of Nevada in assisting the patients and their families dealing with this devastating disorder,” Peckman says. “During these difficult economic times, we are proud to be a model of how Nevada organizations with shared interests work together for the common interests of patients in need to enable more effective management of their conditions.”

Still, Testa says that even with rent-free space it costs nearly $12,000 a month to keep the doors open. She’s worried because ALS of Nevada’s annual fundraiser—the Walk ’n Roll for ALS, which usually brings in about $65,000—isn’t until Sept. 25.

There have been shows of support throughout the community, however. David Saxe, who operates the V Theater and sits on ALS of Nevada’s board, is offering two free show tickets to “V—The Ultimate Variety Show” to anyone who makes a donation of $50 or greater. Testa is keeping her fingers crossed that others in the state will also reach out.