Anthony Carbajal — the creator of a poignant Ice Bucket Challenge Video that has raised $3.8-million for The ALS Therapy Development Institute — has been named the 2015 recipient of the Cash, Sweat & Tears Award.
The award, which annually honors an extraordinary volunteer who has taken on physical challenges or overcome tremendous obstacles to raise money for charity, was presented today in Orlando at the annual conference of the Peer-to-Peer Professional Forum, which oversees the Cash, Sweat & Tears program.
“In a year in which the Ice Bucket Challenge demonstrated to the world the power of volunteer-led fundraising programs, we are delighted to present this award to Anthony,” said David Hessekiel, the Peer-to-Peer Professional Forum’s founder and president. “His emotional, personal appeal has done much more than raise money for ALS research — it has inspired millions of people around the globe and put a human face on a shattering disease.”
ALS has gripped Carbajal’s family for generations. His grandmother Marie was diagnosed with the disease when Carbajal was in middle school and died six years later. His mother, Catherine, has been living with the disease since he was in high school.
In 2013, Carbajal began feeling weakness in his hands, arms, and shoulders — weakness that made it almost impossible for him to continue his work as a professional wedding photographer.
In January, 2014, he was diagnosed with ALS. He was just 26 years old at the time.
“Since then, I’ve lost the ability to button my clothes and open bottles,” he says. “I feel like I have weights strapped to my body. Taking a shower is a workout in itself.”
When the Ice Bucket Challenge became a viral sensation in 2014, raising an estimated $220-million worldwide for ALS-related charities, Carbajal naturally felt compelled to help raise money for and awareness about the disease. But rather than simply completing the challenge, he created a powerful, 7-minute video that included an unscripted, tearful account of his battle with ALS.
“As the Ice Bucket Challenge was growing, its success had been bittersweet for me because I felt as though there was a lack of complete understanding of what ALS truly is,” he said. “So I decided to turn the camera on myself. I didn’t know what I was going to say, but I knew I wanted it to give people a better sense of what the disease is — and why it’s so important to find a cure.”
Carbajal’s video accomplished what others’ had not. It started a conversation about the disease — and put a human face on its devastating effects. With more than 16 million views, it has also put Carbajal into the public spotlight. He has since been able to discuss the disease on the popular Ellen DeGeneres show, pen essays for media outlets like CNN.com, and start an online campaign called Kiss My ALS.
In turn, his work has provided lessons to volunteers and nonprofit fundraisers about how to connect donors to your favorite cause.
“With any cause, you have to be transparent and authentic. That’s the reason why my video has been so successful,” Carbajal says. “If the reader, or the viewer, or the person contributing doesn’t understand the story behind the cause, they aren’t going to be as involved.”
Even more important, however, has been his impact on ALS TDI, and it’s work to find a cure for the disease. As a result of the money raised from Carbajal’s video, ALS TDI has been able to expand its precision-medicine program from 25 patients to 300, as well as move forward with clinical trials that are likely to help advance the development of new ALS drugs.
“Anthony’s story is the story of ALS and the urgency we all feel in the need to develop effective treatments and cures for patients today,” says ALS TDI chief executive officer Steve Perrin. “His Ice Bucket Challenge video inspired thousands of people to join the fight and give to ALS research at ALS.net. As the only ALS organization 100 percent focused on ALS research, we have been able to invest those dollars rapidly into research programs, including expanding our precision medicine program, the only one for ALS in the world, from 25 patients to 300.”
As the winner of the Cash, Sweat & Tears Award, Carbajal gets a $1,000 check from award sponsor Blackbaud, a trophy, and a collection of footwear and apparel from New Balance.