Last summer, videos of people dumping buckets of ice water on their heads flooded Facebook as part of a campaign to raise money and awareness for amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. On Friday in Boston, the ALS Association kicks off the second year of that effort, the Ice Bucket Challenge (ICB), with co-founders Pat Quinn and Pete Frates.
The 2014 viral sensation raised $115 million for the ALS Foundation and its local chapters, and $47.1 million of those donations have been designated for specific projects and initiatives. For ALS patients, scientists, and supporters alike, the unprecedented outpouring of funds marked a positive shift in the landscape of research for the disease.
“Before the Ice Bucket Challenge, nobody really knew what ALS was. It was so hard to fund raise, and people just weren’t interested, and now it’s completely different,” 32-year-old Matt Bellina, of Bucks County, Philadelphia, and a former U.S. Navy combat pilot who was diagnosed with ALS last year, told FoxNews.com.
“Because of the Ice Bucket Challenge, I think that we’re going to beat this thing” he said. “It’s just a complete game changer.”
According to the ALS Association, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, patients’ motor neurons die, which renders the brain incapable of initiating and controlling muscle movement. The Food and Drug Administration (FDA) has approved one ALS drug, riluzole, which slows the progression of the disease, but it does not offer a cure.
Bringing hope for patients
Bellina commissioned directly into the Navy from the Virginia Tech Corps of Cadets in 2005 and started flight school immediately. During training, he began to notice something wasn’t right with his hands; they were cramping and clumsy. He told his flight surgeon about his symptoms in 2009 and in 2010 was grounded from flying.
Unable to fly, he volunteered for deployment, doing a ground tour of the Horn of Africa, and then trained in Army combat, and returned to Africa.
“I had been flying roughly four and a half years,” he said. “I felt bad, like I was a burden on taxpayers.”
As the years progressed, Bellina’s arms began to constantly twitch, and his left hand was cramping so much that he was unable to ignore it anymore. In fall 2012, knowing he likely had ALS, he saw a doctor. It took another 17 months to receive a formal diagnosis, as the disease has no biomarkers and there is no blood test— doctors and patients simply watch the symptoms progress. Bellina is not a genetic carrier for ALS.
Bellina then made two lists— one of all the things ALS can’t take away from him and one of all the things ALS can get him out of. His first list includes his love of music and watching his sons JP, 4, and Kipling, 2, play. The second list includes changing diapers and group physical training in the Navy.
“When I get bummed out, I look at those two lists,” he said.
As he’s watched his lifestyle changes and his children grow, Bellina has accepted that he has a limited time left, but he believes in staying positive.
“I’m not trying to sugar-coat it. This disease is actually really bad, horrible. It tears families apart and is killing veterans at an alarming rate,” he said. “We’re much more … versatile than we think we are, resilient, and we don’t really find out until we have to.”
After being granted medical retirement from the military in spring 2015, he plans to enroll in classes at the Princeton Theological Seminary. He works as a patient reviewer for the Department of Defense Congressionally Directed Medical Research Programs, which will provide $7.5 million for ALS research.
Compared to other ALS patients, the disease has been slowly progressing for the father of two. Although Bellina’s legs are stiff, they’re still strong. He can pick up and carry his sons up the stairs, but he no longer does so due to a fear of falling. His hands are his weakest part of his body. He can still hold things, but he is clumsy. When he lies still for too long, his muscles spasm, which is painful. Bellina is still able to eat, talk, breath and swallow.
“Those things will come, and you gotta be ready for them,” he said.
He can still speak, but Bellina has begun banking his voice so he’ll still be able to have conversations— sounding like himself— with his kids when he loses that ability. He’s made other friends within the ALS community, and his children are comfortable around people in wheelchairs, which reassures him they’ll be okay when it’s his turn.
Bellina has connected with the ALS community, fundraising with the UMass ALS Cellucci Fund at the University of Massachusetts Medical School, as a participant in research with the ALS Therapy Development Institute in Cambridge, Massachusetts, and working with Compassionate Care ALS in West Falmouth, Massachusetts.
Bellina, who said his wife, Caitlin, is his hero, emphasized the toll that ALS takes on families and caretakers.
“This thing doesn’t just take away muscles— it beats us up, kills us, and literally tears families apart,” he said. “It exhausts everybody around you. I think those people deserve a lot of recognition.”
Bellina is grateful that the U.S. Department of Veterans Affairs (VA) covers his care.
His first VA doctor’s appointment is in August.
“Even if [a cure] doesn’t happen in my lifetime, doesn’t save me, which I hope it does, I’m not trying to be a martyr,” Bellina said. “At the very least, you know it was worth it because this thing just can’t go on forever.”
Launching much-needed research
The Ice Bucket Challenge provided the $1 million needed to launch the U.S. branch of Project MinE, a 15-country collaboration to sequence the entire genome of 15,000 ALS patients and 7,500 individuals without ALS. Its goal is to find as many genetic factors that contribute to ALS as possible, then identifying the potential targets for therapy.
Project MinE USA is currently sequencing the genomes of about 400 ALS patients.
“Human genome mapping costs about $3 billion, and our goal here is to do over 22,500 people [in the U.S.],” Dr. John Landers, a professor of neurology at UMass Medical School, told FoxNews.com. He and Dr. Jonathan Glass, director of the Emory ALS Center, are directors of Project MinE USA.
About 10 percent of ALS cases are genetic, but 90 percent are sporadic, which could stem from a combination of genetic and environmental factors. Since 2003 researchers have identified about two-thirds of the genetic factors— a notable feat in the field— but it’s more important to know what pathways are altered within ALS, Landers said. Therefore, Project MinE is looking at the genomes of ALS patients and healthy patients to study how they vary.
With all the countries working together, Landers said his team is aiming to finish the mapping within the next few years.
For the Massachusetts chapter of the ALS Foundation, the unprecedented success of the Ice Bucket challenge— which has origins in the state— allowed the chapter to contribute $600,000 to the ALS Association Research Program, and led to over $8.5 million in funding for various research initiatives at Massachusetts General Hospital.
“We felt, to be true to donor wishes, we should make a sizable gift to research, and the other thing we did was we were able to invest some money in our equipment loan program,” Lynn Aaronson, executive director of the ALS Association, Massachusetts chapter, told FoxNews.com. “Massachusetts is one of the major hubs in the country for ALS not only for research but patient care.”
On Friday, the organization kicks off the Ice Bucket Challenge, which will run the month of August. To complete the challenge, participants must dump a bucket of ice water over their heads, calling out three or more people to also take the challenge. The ALS Association’s website asks participants to consider making a donation.
In May 2015, Pat Quinn, co-founder of the Ice Bucket Challenge, and who was diagnosed with ALS in 2013, was honored by The Webby Awards for the event’s success. His five-word speech has become the tagline for this year’s event: “Every August until a cure.”
“Hopefully people will look at the Ice Bucket Challenge as a chance for us to actually make history and change something that’s not going to change otherwise,” Bellina said.