When Josh Hourscht was diagnosed with Amyotrophic Lateral Sclerosis — commonly known as ALS or Lou Gehrig’s Disease — in April 2014, he made a choice.
“Life can change overnight, but I chose to create a purpose and focus on living, not dying,” said Hourscht, 41.
Along with his wife, Brooke, and their family and friends, Josh has been on a mission to promote awareness about the progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Gradually ALS robs those impacted of the ability to walk, move, speak and breathe — usually over a period of two to five years.
“I try to focus on hope, treatment and a cure. We have had multiple breakthroughs in research the last 12 months and I consider it a movement that is gaining momentum. All the people who are living with ALS and all of those who have sacrificed their lives have really made a difference,” said Josh, who will be the guest speaker at the Third Annual Bite Nite Tucson to benefit the ALS Association Arizona Chapter on Aug. 27. (See box)
Josh and other supporters are attempting to build on the success of the 2014 Ice Bucket Challenge, the fundraiser that took social media by storm and contributed directly to the recent discovery of NEK1, a new gene that ranks among the most common contributors to the disease and will provide scientists with a potential target for therapy development.
The fundraiser also raised the profile of the ALS Association, which has committed $99 million to global research in order to find effective treatments and a cure for ALS.
The nonprofit organization also provides a variety of free services and support to those living with ALS and their families along with advocacy and community education.
The ALS Association Arizona Chapter serves about 350 patients and their families statewide annually; about 75 of those live in Southern Arizona.
Josh said ALS Association services are invaluable to him and others battling the terminal disease. In particular, he cited the Loan Closet that provides specialized medical equipment, technology and supplies ranging from bathroom equipment to $30,000 motorized wheelchairs and computerized speech generating devices operated with eye gaze systems.
“It takes time to qualify through Medicare and insurance takes time, but if you have this disease, you can’t wait five months for a wheelchair — that might be 25 percent of the rest of your life.
“The ALS Association can help cover that gap where you would otherwise be without and allows you to live a normal life with the equipment they loan you. This isn’t $50 equipment: You are talking thousands of dollars per patient just to cover the gaps in insurance,” said Josh, who has been in a wheelchair full-time since January and is paralyzed from the neck down.
Pete Hughes, Southern Arizona care services coordinator for the ALS Association, sees the resources in action.
“ Without the services we provide, the quality of life would be severely impacted ... and people with ALS are just like everyone else: They like to keep their independence until the last possible minute,” he said.
Taryn Norley, ALS Association Arizona chapter executive director, said the organization tries to help relieve the devastating expenses of ALS, which can reach $200,000 per patient annually.
“When someone is diagnosed, their caregiver often has to quit their job to care for them, so sometimes a family loses two incomes at one time. It is very challenging and a big burden for our patients financially,” she said.
Norley said the organization also works to combat the emotional toll of the disease through support groups for caregivers and families. Additionally, it recently implemented a Children’s Program for youth who have lost a loved one to ALS, which has been very well received.
“We had a number of young adults who said they really didn’t have anyone to talk to when they lost a parent to ALS and it would have been nice to talk with other kids going through the same thing ... the people who run the program can tell the kids, ‘This is hard and sad, but you will be OK,’” said Norley.
