Why the Ice Bucket Challenge still matters

Staff members of the ALS Therapy Development take the Ice Bucket Challenge in Cambridge.

When millions of people were dumping buckets of ice water over their heads last August, Michael Wesolowski was on vacation in Portugal.

It was there that he realized something was wrong.

He’d noticed he was catching his foot, tripping a lot, over the previous year. But he passed it off, thinking the clumsiness and pain in his knee and feet were symptoms of wearing bad shoes, a previous broken bone, and being a little out of shape. At the time, his daily exercise mostly consisted of walking to and from work in Cambridge.

Navigating the railing-less stairs of a castle in Portugal sent a new message.

“I went from being 40 years old to being 90,’’ he said.

Wesolowski struggled so much that his wife and friend who were with him teased him about it.

“They were like, ‘Wow, you need to make some lifestyle changes, like eat less, walk more,’’’ he said. “And I’m like, ‘Wow, I shouldn’t be this out of shape.’’’

During another tour, Wesolowski decided he couldn’t physically continue after he saw the hill that needed to be climbed. He was already exhausted.

He waited for two hours while his wife and friend continued the tour — embarrassed and resolved he’d make changes to his lifestyle when he got home.

And he did. He changed his diet and exercised more — but there wasn’t any improvement. He still couldn’t walk up stairs.

He went to the doctor and explained his lifestyle changes. She told him to stick with the new routine a little longer, so he did.

A simple, shareable concept

It’s a humid day in early August, and everyone is waiting for the governor. Blue buckets line the steps of the Massachusetts State House, and onlookers crowd the railings above, waiting for Charlie Baker to take the ALS Ice Bucket Challenge. Patriots quarterback Tom Brady is in the news and also on Baker’s T-shirt, the QB’s likeness sandwiched between the words, “Free Brady.’’ Soon, both Baker, and Brady, are wet.

“I don’t think I need my afternoon cup of coffee,’’ a smiling, dripping Baker says.

Gov. Charlie Baker participates in the Ice Bucket Challenge with its inspiration Pete Frates.

When it went viral last August, the Ice Bucket Challenge brought ALS into the public consciousness. The challenge started in early July and gained momentum when it reached Jeanette Senerchia, whose husband is living with ALS, also known as Lou Gehrig’s disease. She passed the challenge to another patient, Pat Quinn, who passed it to his friend in Boston and fellow patient, Pete Frates.

Frates, a former captain of the Boston College baseball team, was diagnosed with ALS in 2012 at the age of 27. His father, John Frates, said he was skeptical about his son’s idea to pass the challenge on to his connections in the sports world. He said his son had a sense that plugging the Ice Bucket Challenge into the sports community would help raise the level of awareness about ALS that had previously been lacking.

“Pete would tell me he knows all these guys, these sports figures throughout Boston and across the country,’’ John Frates said. “And I would say, ‘Oh yeah, sure, and Obama’s going to call me any minute for foreign policy.’’’

The challenge exploded, quickly spreading from the sports community and Boston to the rest of the world. Cities, celebrities, tech moguls, and former presidents filmed themselves getting doused with ice water to raise awareness for ALS.

Over $225 million was raised worldwide, and the videos got more views than the Super Bowl and Oscars combined. More than 17 million videos related to the challenge were shared on Facebook and watched by more than 440 million people, more than 10 billion times.

On August 20, 2014 alone, the ALS Association website had 4.5 million visitors, up from the usual average of 17,500 daily visits.

“That shows you that it didn’t just raise money,’’ said Lynn Aaronson, executive director of the Massachusetts Chapter of the ALS Association. “People took the time to go and check out what ALS was, so it truly did raise both awareness and funds.’’

The same parties involved last year are trying to make the cause go viral again.

The diagnosis, and the fight

Wesolowski was at a Patriots playoff game in January when it became clear to him the issue wasn’t being out of shape.

As the designated driver for his group, he hadn’t been drinking. But walking up the slight incline of the ramp to his seats in the third tier became so difficult that he had to ask his friends to stop three times.

“I’m like what’s going on? I looked around because I was like, ‘Wow, I’m horribly out of shape,’’’ Wesolowski said. “But you look around at a Patriots game and you’ll see some guys who are 300 pounds, beer bellies like that, drunk, and they’re passing me with ease. And I’m holding onto the railing and asking my friends to stop. That’s when my friends were really like, ‘You really should go back to the doctor and push.’’’

He went, and his doctor got him into a neurologist in four days. There’s no single test for ALS, so Wesolowski’s doctor’s began a series of tests to eliminate other possible causes of his symptoms.

It wasn’t until the doctor mentioned they were doing a genetic test for Kennedy’s disease and Wesolowski went home and Googled it that he realized they were heading toward a diagnosis of ALS. Kennedy’s Disease mimics ALS symptoms, but it is not fatal.

“It’s one of the ones when you finally hear that you have ALS, you’re hoping like hell that you actually have Kennedy’s,’’ he said.

In March, Wesolowski was given a “possible ALS diagnosis,’’ the first tier of an ALS diagnosis. Based on his symptoms, Wesolowski may have a slow moving variant of ALS called Progressive Muscular Atrophy, which he calls “ALS Lite.’’

“It’s the same thing,’’ he said. “All the motor neuron diseases are fatal, and there’s no cure for any of them. But this one’s slower moving, so you have more time. And it’s slower through each stage.’’

The impact on research

In the same city where Wesolowski works, photos of patients, past and present, line the hallways of the ALS Therapy Development Institute in Cambridge. Pat Quinn’s portrait is among them.

Before the Ice Bucket Challenge, Steve Perrin, the institute’s CEO and chief scientific officer, had to explain what ALS was and why potential investors should donate. Now Perrin says there’s hope among his patients, not just from the $4 million boost in funding, but because of the awareness it raised.

“I don’t have to do any of that anymore,’’ he said. “ALS is now a household name, everyone knows what it is, and they’re excited to be a part of it. They want to be a part of it.’’

The institute isn’t the only group crediting the impact of the Ice Bucket Challenge with pushing forward research on the debilitating disease. Researchers at Biogen, also in Cambridge, and Columbia University Medical Center recently announced a study of ALS that is being partially financed by funds from the challenge. Scientists at Johns Hopkins credited the success of the challenge with giving financial stability to ALS research, aiding a breakthrough in their work.

Research associate James Phelan works in the ALS TDI lab.

Connecting funding, research, and drug development is rooted in the institute’s founding in 1999. It was started by the Heywood family from Newton after their son Stephen was diagnosed with ALS. They took the traditional approach of a nonprofit at first, raising funds that were given to researchers. But when they realized the academic research model wasn’t as focused on drug development as much as they wanted and needed, they flipped the model on its head.

“We were founded and funded by families, which makes us really unique,’’ Perrin said. “It’s a very emotional environment to work in because every single day there’s patients walking through our hallway. They quickly become your friends, you’re giving them hope, you become their family, and then unfortunately many of them lose their battle with the disease.’’

The institute used a third of its funding from the Ice Bucket Challenge to grow their Precision Medical Program, which focuses on bringing the patient into the context of learning more about the disease and the drug development process.

Participants in the program are from all over the world and are in all different stages of the disease. The institute puts everything they can possibly know about a patient into a database using patient medical history and blood and tissue samples. Patients in the program wear actigraphs on their arms and legs to track and see if their movement is starting to drag.

Each patient gets full genome sequencing, and stem cells, which will have potential ALS drug treatments tested against them, are created in the institute’s lab from a patient’s skin cells.

The hope is that they can use all the gathered information to learn more about the disease and then be able to approach a treatment for each patient in a targeted way.

“We think that putting all that data into a single repository is the real power,’’ Perrin said. “That’s what’s going to give us those unknown clues, mining all of that data together to give us that, ‘Aha’ moment of ‘Geez, if we didn’t have all this data in one database, we would have never found that.’’’

Before the Ice Bucket Challenge, there were 25 participants in the program. Now there are about 185, but by the end of the year they will hit their target of having 300 people enrolled, according to Perrin.

How do you repeat a viral sensation?

In February, Facebook reached out to the ALS Association and the families who helped start the challenge. The company told John Frates that in its six weeks, the Ice Bucket Challenge did more than any other viral sensation on their site in the last 13 years.

Despite the immense participation the first time around, there were plenty of folks who didn’t do it. According to Facebook, the main reason some people didn’t take the challenge is that they weren’t challenged themselves.

“[Facebook] approached us and said, ‘What if Pete and Pat challenged everyone personally?’’’ Frates said. “So that’s what they did.’’

With help from Facebook, a website dedicated to the challenge was created where visitors can choose from a list of ALS organizations to donate, watch others do the challenge, and learn about the disease.

“They have been helping with strategic counsel on how to make this an annual event that benefits the entire ALS community and have taken a personal interest in looking out for the families who are fighting ALS,’’ Brian Frederick, ALS Association chief of staff, said of Facebook’s involvement.

Facebook also helped package the story of the challenge into one video that was submitted to the Cannes Lions International Festival of Creativity. The challenge won 11 awards.

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Looking back and moving forward

After his diagnosis, Wesolowski started doing research on ALS and found that the institute was accepting new patients and was just around the corner from where he works as a biotech patent attorney in Kendall Square. He credits the Ice Bucket Challenge for his spot in the program.

“It’s an awful thing to get … but having my symptoms happen just after a $308 million dollar windfall into research, it gives you hope in an otherwise bleak diagnosis,’’ he said.

Sitting in a conference room of the ALS Therapy Development Institute, there’s no immediate visual sign of the disease in Wesolowski. His case is so early, there is still a chance that his doctors could find he isn’t linked to any of the ALS genetic mutations.

The muscle weakness seems to so far be confined to to his hips and lower back, affecting his legs. When he flexes his calf muscle, there is no bulge where there should be. When he tries to stand from a chair with his arms crossed, it requires a first try to get momentum.

Wesolowski has been in the program for about two months now, and he says in some ways it’s almost like having your own research team.

“When you think about it, when you’re part of that patient population in any way, to sort of be singled out is an empowering feeling,’’ he said. “To know that people are looking out, not just for all of us, but maybe even you specifically to see how you’re different from everyone else and what you have in common.’’

Michael Wesolowski shows off his actigraphs.

In the lab, poster boards with facts about ALS alternate as wall hangings with photos of patients. There’s hardly a picture where the patient isn’t smiling and with their loved ones.

Robert Goldstein, the institute’s vice president of marketing and communications, said it’s hard not to get emotional walking by them.

“Faye Magneson just passed,’’ he said, pausing to talk about each patient while walking down the hallway. “She funded and worked with us for eight years. I really wish that we had found something for her. But there are lots of faces up here that we still have a shot at trying to find something for. And that’s why we’re here.’’

When the institute’s staff took the challenge this year, the message on their matching t-shirts was to the point: #endALS.

“It could be any one of us, to tell you the truth,’’ Goldstein said, who was surprised when Wesolowski walked in — they’ve known each other for years. “We have no idea who gets ALS or why. It could hit any one of us or our families at any time.’’

Wesolowski has a fuller understanding of what the challenge meant than he could have ever imagined last year.

“Growing up in Boston my whole life like, oh, it’s a Yankee,’’ he said of learning that ALS was Lou Gehrig’s disease last August. “But it wasn’t till I was forced to look at it that I was like, ‘Oh, this disease can turn you just into a head.’ You basically only have movement in your eyes, and that’s the scariest thing. It’s tough to actually force someone to visualize that for a second, and you don’t fully go to that step until you’re told that that’s what’s going to happen to you.’’

This year, he just wants to thank those who have participated, saying it makes him optimistic that a treatment and cure are within reach.

“I’m a little bit of cynic myself, and when [the Ice Bucket Challenge] went around last year, I’m sure people rolled their eyes, and I’m sure there was some backlash to it,’’ Wesolowski said, getting emotional for the first time. “But we need it.’’

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