May is ALS awareness month, sheds light on deadly neurological disease

May is ALS Awareness Month. Hard to believe it’s already been one year since the Ice Bucket Challenge kicked off sweeping Twitter and Facebook pages.

While millions of dollars have been raised, the question remains; how much more do we know about the deadly neurological disease?

Type in ALS Ice Bucket Challenge on YouTube and you’ll be overwhelmed by the number of videos submitted between May and August in 2014. Celebrities from Will Smith to Jack Black and even Oprah Winfrey dared to dump the icy water over their heads in the name of Amyotrophic Lateral Sclerosis.

Before the challenge started, a study by the ALS Association found fewer than half of Americans actually knew what ALS stood for or what it implied for patients given the diagnosis.

Dr. Robert Bowser, head of ALS research at the Ira Fulton Research Clinic at Barrows Neurological Institute in Phoenix, said ALS is a grave disease.

Specifically, ALS is a “neurodegenerative disease that causes the death and loss of a particular type of cell called the motor-neurons located in your brain and spinal cord that control all the muscles of your body,” he said.

“In most patients, it does not affect the mind,” Bowser said. “In over 30 percent of the patients, there are some cognitive changes that occur over time.”

The early symptoms include the inability to move, swallow, or even talk clearly. As ALS takes over the body, Bowser said, “It ultimately results in respiratory failure.”

Right now, there is no cure for ALS. “The prognosis is not good,” Bowser explained. When an ALS patient is finally identified, “Unfortunately, the time from diagnosis to when a patient passes is variable. Sometimes it’s as short as a few months, and in a minority of them they can live greater than a decade.”

ALS researchers want to identify how and why the disease starts and why it progresses are varying stages in different patients.

Bowser said ALS is considered an orphan disease, a term given to diseases with less than 200,000 cases nationwide.

Until last summer’s ice bucket challenge started, research for the disease was financially stunted. How the challenge began last year is disputed, but how much it raised is not.

The ALS Association’s website reports more than $110 million came in through social media donations in less than four months between May and August last year.

A small, but very helpful chunk of that money went to Barrow’s and several other well-known ALS research programs here in Arizona, said Bowser.

“Currently, there are a few, but late stage clinical trials for ALS,” Bowser continued. “Although the pipeline for drugs within the bio-tech and the big pharma industry is growing.”

This year, he announced a new phase III trial will get underway for a drug made by Cytokinetics, Inc. out of San Francisco, California.

Dr. Jeremy Shefner will lead drug trials worldwide out of the Barrow Neurological Institute in Phoenix.

Bowser explained the theory behind the drug trial is that it will target some symptoms, including muscle weakness.

If the drug performs as expected, it could allow the muscles to perform better and provide a higher quality of life for a longer period of time.

Money from the ice bucket challenges are also helping Bowser and his team of researchers look for DNA markers for early ALS detection.

Today, a typical ALS diagnosis can take about a year to fully detect.

“The goal for this diagnostic test is to aid the clinician in make a more rapid diagnosis, from 12 months to 12 weeks,” Bowser said.

The hope is a patient can get into a clinical trial early. If that happens, the drug treatment can have a greater benefit.

It may also give an ALS patient, their family and friends precious extra time to fulfill his or her own bucket list of dreams and aspirations.