Josh Nuss, executive director of the Iowa ALS Association, says the ripple effects of that widely successful media blitz are still being felt.
“Most people know what ALS is now,” Nuss says. “On the research front, since the Ice Bucket Challenge, we’ve been able to actually triple the amount of funding we’ve been able to put into research and that’s shown across the board in a lot of the research studies going on. Last year, the first treatment in over 22 years was approved by the FDA to treat ALS.”
In the challenge, people were videotaped pledging to donate money to the charity while dumping buckets of ice water on their heads and calling out others by name, challenging them to do likewise. As unlikely as it sounds, the campaign was a huge success and it’s had a lasting impact.
“There’s a lot of young people getting involved with research as well,” Nuss says, “whether they have a personal connection or they were involved in the Ice Bucket Challenge and that led to them wanting to help find treatments and a cure for ALS.”
ALS stands for Amyotrophic Lateral Sclerosis and is also known as Lou Gehrig’s disease. It’s relatively rare and only afflicts about 250 Iowans. Like cancer, ALS comes in many forms and can rob a person of their voice well before it claims their life. Nuss says an innovation was announced just last month called Project Revoice.
“As somebody progresses and they lose the ability to speak, before they lose that ability, we’re encouraging them to voicebank through ProjectRevoice.org and when the technology is available at the end of this year, they’ll actually have their voice and be able to speak through their device,” he says.
ALS is a motor neuron disease which usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. Once diagnosed, life expectancy is usually only two-to-five years. Learn more at www.alsiowa.org.
(Pat Powers, KQWC, Webster City contributed to this story)