Doctors and researchers continue to work to find a cure for amyotrophic lateral sclerosis, also known as ALS, or Lou Gehrig’s Disease. Speed is, unfortunately, of the essence, as most people diagnosed with ALS die within two to five years of the start of symptoms. There are remarkable exceptions — the ALS Association says that 20 percent of ALS patients live five years or more — but the symptoms are progressive, extremely degenerative and devastating to families around the world.
Even with treatment options to help extend life, ALS is 100% fatal.
Money spent on research has tripled each year for the last few years, and that’s in large part due to people sharing their personal stories with the disease, and advocating for change. Here are just a few of those.
Lynne and Augie Nieto were high school sweethearts who got married and started a storybook life. He created LifeFitness, one of the largest gym equipment companies in the world, but at the age of 47, it all came crashing down when he was diagnosed with ALS. It plunged Augie and Lynne into a world they never even knew existed.
Now, together, they’ve launched Augie’s Quest with a mission of raising funds to find a cure.
She explains how his suicide attempt three months after his diagnosis became a turning point for their family. She honestly and candidly describes her family’s difficult journey over the past 10 years of living with the disease but reveals how it’s a much more rewarding and enriching life than they ever imagined when he was first diagnosed.
Lynne also explains the shift in thinking they’ve seen about ALS over the past decades, from focusing on just living briefly with the disease before death to truly talking about a cure.
Nanci Ryder has been living with ALS since 2014. Since then, she’s used her skills as a Hollywood publicist (she’s also the founder of BWR Public Relations) to raise awareness about the disease, along with some of her famous friends, including actors Courteney Cox and Renee Zellweger, who regularly appear at “Team Nanci” events and have spoken up about their friend.
Ady Barkan is a political activist, lawyer, philanthropist and father. And he’s dying of ALS.
At 34 years old, Barkan gets weaker by the day, can no longer speak without the assistance of a computer, and uses a motorized wheelchair to get around, but says he’ll use every last breath to push for policies that matter to him — including healthcare coverage for all Americans.
Barkan was diagnosed shortly after the birth of his first son. He says his fight is for his child, and for families everywhere.
To learn more about ALS, visit the ALS Association at alsa.org.