Charity Spotlight: ALS Association Arizona

The Cause
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading to paralysis and ultimately, death. Unfortunately, there is no cure to date.
“Historically, we’ve tried several different drugs to treat patients, and over 20 years we’ve had failure after failure,” said Dr. Bowser, director of the ALS Research Center at the Barrow Neurological Institute and co-chair of this year’s Bite Nite.
Fortunately, new research is creating options for treatment. In the last five years, researchers have put together sup-populations of those with ALS, and treatment options that work for their specific variant of the disease.
“ALS is a very heterogeneous disease,” Bowser said. “It’s not surprising that there’s not a medication that can cure everyone.”
According to the ALS Association, as many as 20,000 Americans have the disease at any given time; however, the disease has historically been known as Lou Gehrig’s disease after the well-known baseball player.  ALS was thrust into the national spotlight during the summer of 2014 when the viral “ice bucket challenge” took hold of the Internet.
Executive Director of the ALS Association Arizona, Taryn Norley, was able to experience the phenomenon firsthand.
She recalls the phones ringing off the hook with challenge participants calling the association asking for permission to come down to the office to do the ice challenge bucket there or with members of the staff.
“It was amazing and just being a part of it was so cool,” she said. “The donations really helped us sustain the organization.”
The Story
The ALS Association Arizona Chapter was founded in 1991 to serve those living with ALS, their families and caregivers. The association currently serves approximately 450 patients across the state by providing equipment, transportation to medical care, access to their three medical centers, emotional support for the entire family and more.
ALS is also an expensive disease, often costing upwards of $200,000 a year, including the loss of wages. The ALS Association is able to help mitigate those costs through several of their programs.
“Through our equipment loan programs we sometimes have $60,000 to $70,000 in equipment in someone’s home at one time,” Norley said.
In addition to providing support and resources for those affected by ALS, the association funds research and awareness efforts.
“The local ALS chapter does a great job of supporting patients and their families, but also of funding research locally,” said Bowser.
The ALS Association has funded more than $99 million in research and clinical management projects since 1985 and is closer to finding a cure than ever.
“I think we’re getting close on some treatment options,” said Norley. “Now we have to consider what we’re going to do and how we’ll continue to support our patients when this treatment comes.”
The Event
The ALS Association Arizona chapter is heading into its ninth annual Bite Nite fundraising event. Now, the association hosts two events a year, Bite Nite Phoenix and Bite Nite Tucson.
Bite Nite Phoenix will take place Saturday, June 3 at the Westin Kierland Resort & Spa and Bite Nite Tucson will take place Saturday, August 26 at the Westin La Paloma Resort & Spa. Attendees will enjoy bites from several top restaurants, such as North and Bourbon Steak, cocktails, live entertainment, a silent auction, live auction, speeches by ALS patients and more.
“I’m looking forward to another stellar event as always, and seeing some of the patients come out with their families and enjoy themselves,” said Bowser, who attended for several years before becoming co-chair of the event.
Each year at the event features speeches by ALS patients who reflect on their experience on the disease, and speak to the resources provided by the ALS Association.
“The event is such a good mix of message and fun,” said Norley. “What I love most is getting to see patients interact with each other.”