Division commencement speaker to highlight family struggle with ALS



Photo credit: Anthony Carbajal

It comes in muscle twitches and spasms along his shoulders, arms and neck—each a frightening, heartrending reminder that his otherwise youthful body is beginning to fail him.

Anthony Carbajal, 27, was diagnosed with ALS, or Lou Gehrig’s Disease, a little more than a year ago. He’s already started losing control of his fingers, and he says he’s noticed his arms have started to atrophy—especially worrisome for a professional wedding photographer who needs to wield a camera.

He knows only too well what will come, having watched two generations of his family suffer with the neurological disease that damages motor neurons in the brain and spinal cord, leading to paralysis and, within an average of two to five years, death.

His grandmother Marie suffered for six years before passing away. His 43-year-old mother Catherine was diagnosed 13 years ago but continues to fight on, despite profound paralysis.

It was because of this valuable first-person perspective—both as a caregiver for someone with ALS and as someone with the disease itself—that the USC Division of Biokinesiology and Physical Therapy invited Carbajal to address the Class of 2015 at its commencement ceremony on Friday, May 15.

“I didn’t hesitate at all when the division asked me to speak,” Carbajal says. “It’s such a huge honor, and the fact that USC believes in my message that much, it’s just really heartwarming.”

The Accidental Advocate

Since his ALS diagnosis, Carbajal has become an unofficial advocate for ALS research.

It began when his Ice Bucket Challenge video went viral last summer. 

In the nearly 7-minute-long video, a two-piece bikini-clad Carbajal provocatively suds up his Kia Optima sedan before being doused with cold water.

The otherwise quirky video, that contains adult language, takes a poignant turn when Carbajal stares directly into the camera and shares his story, hiding his face and sobbing softly as he describes how scary it is to face the disease.

“I felt like for the first time our voices were being heard with the ALS Ice Bucket Challenge,” Carbajal says. “I made my video, and the world told me they were listening, and that acknowledgement has meant so much to me.”

From YouTube to Daytime TV

The world was definitely listening; Carbajal’s video got more than 20 million views and was seen by daytime talk show host Ellen DeGeneres, who Carbajal nominated—as well as Miley Cyrus—to take the Ice Bucket Challenge.

DeGeneres invited Carbajal and his mother, a long-time fan, to the show.
“My mom watches her show every single day,” Carbajal says. “That’s the thing she looks forward to the most.”

With his mother seated in the front row, Carbajal sat opposite Ellen on the Season 12 premiere, advocating for ALS Therapy Development Institue, a nonprofit biotechnology organization focused on developing effective treatments for ALS, and telling his personal story.

“This is probably the best day of my mom’s and my life,” Carbajal told Ellen during the interview.

It got even better when Shutterfly gave Carbajal $50,000 for ALS TDI and another $50,000 on the show to help support his mother and him during their financial struggle. Carbajal had to leave his job behind because he couldn’t adjust the settings on his camera.

He said he plans to use the donated money to help buy a home for his mother, his new wife and him and to straighten out his financial situation.

“I think the Shutterfly gift taught me that people really do care and that anything is possible,” he says. “If I can create a video in a day and Ellen would have us on her show, I think anything is possible, maybe even finding a cure for this disease.”

Even though the Ice Bucket Challenge—which raised more than $100 million in summer 2014—is a thing of the past, Carbajal continues his advocacy efforts.

Late last year, he launched a fundraising website called alsbucks.org, through which he hopes to enlist 83,333 people to donate just a dollar a month so that collectively they can raise $1 million for ALS TDI in a year’s time.

He’s also been making YouTube videos, answering questions about ALS in an effort to educate people about the disease.

Purpose-Driven Life

It was Carbajal’s diagnosis, he says, that brought his life’s purpose into sharp focus.
“Some times, we work really hard to buy things we don’t really need to please people we don’t really care about,” he says. “I think this diagnosis really just throws those things out the door.”

Carbajal says that because he knows his time is limited, it’s given him the opportunity to live life more mindfully.

“I realize we all have a short time on Earth, and I know I’m terminal, but we all are,” Carbajal says. “It makes me appreciate all the simple moments that much more.”