CARY, N.C. — It’s been 10 years since over 17 million people participated in the ALS Ice Bucket Challenge around the world.
How has this internet trend affected Lou Gehrig’s disease treatment?
What You Need To Know
- Over 17 million people took part in the ALS “Ice Bucket Challenge” across the globe
- The challenge raised $115 million for ALS research and funding
- Larry Falivena completed the challenge in 2014 and was later diagnosed with ALS
- The funding from the challenge formulated a drug that has prolonged his life and quality of life
In 2014, many of us dumped buckets on our heads and donated money for an internet trend, including Larry Falivena and his family.
“I knew a little bit about ALS, but I don’t think I really fully appreciated what it was,” Falivena said.
Three years after Falivena and his family took part in the challenge, he was diagnosed with the disease.
Larry Falivena watching sports practice. (Spectrum News 1/Sydney McCoy)
“The interesting thing about ALS is that there really isn’t a test that you can take to diagnose it. You have to eliminate everything else. So for me, the diagnosis took a while. I’d already been to a bunch of different doctors and they ruled out a lot of other things. So in the final diagnosis came, it wasn’t a huge surprise,” Falivena said.
The disease causes nerves in the body to degenerate over time, to the point where you can no longer move, speak, eat or breathe on your own.
It all follows with a few years of life expectancy, with the father left wondering if he will get the chance to see his sons grow up.
“I wanted to make sure I made the most of the time that I had left… I just trust that God has a plan for my life,” Falivena said.
The Ice Bucket Challenge raised $115 million, allowing Falivena to access a drug trial aimed at slowing down ALS progression.
“If you are looking at that diagnosis, just know that there’s a lot of people working on a way to slow this thing down until we can cure it,” Falivena said. “I’m praying for is that that funding brings about other treatments so that other people with ALS get the same opportunity that I have.”
Larry Falivena taking part in the Iron Horse Tour. (Courtesy: Larry Falivena)
Seven years post diagnosis, Falivena has seen his kids grow up, while maintaining his speech and mobility and still walk around in the same park where he used to work out at 5:30 in the morning.
With each step of his now a much bigger stride than before.
In addition, Falivena has shown support for ALS by completing the Iron Horse Tour, paying tribute to Lou Gehrig. He traveled in an RV with his family, visiting all Major League Baseball parks and meeting other ALS advocates to spread disease awareness.
“Even though it’s considered a rare disease, someone gets diagnosed with this disease every 90 minutes, and at the same time in 90 minutes, someone passes away from this disease,” Falivena explained.
While the splash of the 2014 challenge may never reach the same level, the 10-year anniversary is hoping to bring in more attention on the current and future research.
Funding from the ALS Ice Bucket Challenge helped researchers identify at least 12 new genes linked to ALS, increased clinical trials, eliminated a two-year waiting period for medicare benefits and doubled the ALS Association’s nationwide clinical network.