NEW YORK (CBSNewYork) — There’s new hope for victims of Lou Gehrig’s disease, and it’s thanks largely in part to a huge infusion of research dollars from the “Ice Bucket Challenge.”
As CBS2’s Dr. Max Gomez found out Wednesday, ALS patients are living longer and healthier.
Amyotrophic lateral sclerosis is a progressive degeneration of nerve cells that leads to spreading paralysis and eventual death, usually less than three years after diagnosis.
That may soon change.
Its origins are a bit murky, but the results are clear. As the Ice Bucket Challenge went viral and people worldwide were challenged to douse themselves or donate to the ALS Association, tens of millions of dollars were raised for ALS research and patient support.
Patients like Jonathan Bander.
“I’m grew up in the Bronx, where we talk quickly. I can’t anymore, and I have no use of my left hand,” Bander said.
Bander’s first symptoms were dropping his ski poles two years ago. A few months later, he had the diagnosis.
“I will be dead within five years,” Bander said.
But that prognosis is changing. Lynn O’Connor Vos, the president and CEO of the Muscular Dystrophy Association, a major funder of ALS research, said there’s been an explosion of progress.
“Now there are 50 drugs in the pipeline. And the Ice Bucket Challenge and the infusion of all that money are really making a significant difference,” O’Connor Vos said.
Just as important, there many more doctors, researchers, biotech companies and students entering the field, which helps with new treatments.
“The technological advancements in care and multi-disciplinary care, that probably extends life by as much as 18 months,” said Dr. Matthew Harms of Columbia University Medical Center.
The identification of multiple genes associated with ALS has also given researchers numerous new drug targets and, again, hope.
“With the genetic discoveries and the potential for gene replacement therapy and other therapies, we could potentially cure this,” O’Connor Vos said.
“Now, there’s hope. In past years, there was no hope,” Bander added.
Still, whatever that cure turns out to be, it’s realistically years away. That’s why it’s important to also focus on the therapies that extend life while clinical trials continue to make progress.
For more information on how you can help, without getting ice water poured on you, please click here.