Despite viral success of Ice Bucket Challenge, much work left to do

The Ice Bucket Challenge that took the internet by storm four years ago raised millions of dollars for researching ALS, also known as Lou Gehrig’s disease — but there is more to be done as the intense, costly work of drug development goes on.

“It still costs over $200 billion to bring a drug to market,” said Lynn Aaronson, executive director of the ALS Association Massachusetts Chapter. “The more we can get in the pipeline, the better the chances are that something is going to stick.”

For those who still want to get involved, there’s no shortage of opportunities.

The ALS Association has three major events coming up this fall: A walk to defeat ALS on Oct. 14 at Endicott College in Beverly; another walk on Oct. 20 at Carson Beach in South Boston; and for cyclists, a ride to defeat ALS on Sept. 23 at the Longfellow Club.

People can also become advocates for changes in Congress. The association is working to pass a bill requiring that the five-month waiting period for Social Security disability insurance be waived for ALS patients.

“We want to keep this at the forefront of people’s minds,” Aaronson said. “It is such a devastating disease. We want to keep people aware that it hasn’t gone away since the Ice Bucket Challenge. The need is still great.”

Since the challenge gained traction, there is a misconception that the work is already done, said Dr. James Berry, the director of Massachusetts General Hospital’s Multidisciplinary ALS Clinic.

“The one thing I’d say that’s been an unintended consequence is, I’ll talk with people and they’ll say, ‘ALS, didn’t the Ice Bucket Challenge fix that?’” Barry said. “Now we’re really building on what’s been found. It still takes funding and still takes continued attention and philanthropic support.”

For example, he said, MGH and UMass have teamed up to treat the first patients with a genetic form of ALS. But that is just skimming the surface, he said.

“We need to move from treating one or two patients to treating a host of patients,” Barry said, “and that takes a huge amount of funding.”

Barry suggests that those who donated during the Ice Bucket Challenge go back and make a second donation or give money to Massachusetts hospitals to make a difference on the local level.