Pat & Pablo: Fighting Together to Find a Cure for ALS
Pat, a 34-year-old from Yonkers, NY, knew something was wrong. He could feel weakness in his arms and hands. He soon learned why: Amyotrophic Lateral Sclerosis (ALS) – commonly known as Lou Gehrig’s disease, one with no known cause or cure and that gives a newly diagnosed patient between two and five years to live.
“It was a shock,” Pat says today. ”But after that initial shock wore off, I knew I was young, I knew my progression was not too fast where I would die quickly.” And Pat also knew about biopharmaceutical researchers like Pablo.
“I chose research to try to understand why this disease is happening,” Pablo says from his biopharmaceutical laboratory in Massachusetts, “and then trying to help lots of [patients].” Pablo hopes researching the disease as a whole will help more people in the long run. “I’m very stubborn and I’m very passionate,” he says. “I like hitting my head against the wall because it feels good when it stops and I want this to stop.”
Pat wasn’t stopping, deciding to make his fight public. He started with local fundraisers and giving talks at various schools, colleges, businesses – then an idea hit him and some other young patients: the ‘ice bucket challenge,’ which has since raised $220 million for ALS research. This viral social media phenomenon involving friends and complete strangers from around the world continues to drive Pat’s fighting spirit.
“After the ice bucket challenge, people are more familiar with ALS,” he says.
“That’s not going to bring a cure, but creating that awareness will show people that this disease needs all of our support.”
Pablo agrees. “We’ve been trying to understand the mechanisms to try to either prevent the disease from happening or delay the onset of the symptoms or the progression of the disease itself,” he says. But because ALS is so different for each patient, it’s difficult for researchers like Pablo to pinpoint exactly what mechanism needs to be focused on. Talking with patients keeps him motivated. “It’s the patients helping the scientists understand the disease and how can we figure out the mechanism of the illness’s progression,” he says. “We need to work together to beat the disease.”
Pat would like to see a time “when patients are no longer expecting to die, but manage their symptoms with treatment where you can live a life on your own.” “ALS is a cruel disease,” he says today, “and the people fighting it are the nicest and most interesting people I meet.”
Pat says the hardest part of ALS is not knowing your future. “Time is very precious and every few weeks I get weaker.” Pablo knows this, and he thanks patients like Pat for motivating researchers like him. He also wants them to have hope. “We’re doing everything we can and we’ll keep going,” he says. “We’re not going to stop.”