Three words … Ice Bucket Challenge.

Never before has a cause gained such momentum or so quickly saturated social media as the awareness campaign for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease.

The viral challenge, in which participants dump a bucket of ice water on their heads or donate to the ALS Association, has been accepted by everyone from U.S. presidents to A-list celebrities, garnering a response described simply as “a miracle” by Cheri Sanders, executive director of the ALS Association’s Tennessee Chapter.

“Our phone is ringing off the hook,” Sanders said in September. “One of our strategic plan goals for this year was to create awareness for our disease. We can check that one off.”

Breaking All Records

The numbers are impressive. The ALS Association received 2.4 million new donors and a whopping $107.4 million between July 29 and Sept. 3, compared to $3.2 million during the same timeframe in 2013. Driven by Facebook, the challenge took off late July thanks in great part to supporters of Pete Frates, a former Division I college baseball player diagnosed with ALS in 2012.

Awareness generated by the challenge has been equally impressive.

“This has been a Godsend to help get the word out,” Sanders said. “Before this challenge, it was predicted that only 50 percent of the population even knew what ALS was. Every time I go anywhere now, people recognize who we are and are stepping forward with stories of friends or someone they know who has the disease. The awareness has been like a miracle for us, and we’re so grateful.”

Serving ALS Patients in Tennessee

Amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading to cell death and loss of muscle control. Patients typically survive two to five years after diagnosis. Approximately 5,600 people in the United States are diagnosed with ALS each year, and as many as 30,000 Americans may have the disease at any given time. Sanders said ALS affects approximately 425 Tennesseans, but she estimates that only half are aware of the ALS Association and services available to them.“When someone finds out they have ALS, they have to reach out to us (for confidentiality reasons), but a lot more people have been calling in recent weeks to say they’ve been diagnosed,” Sanders said. “Before this campaign, people didn’t know who to call … especially those who live in small or rural communities. This has enabled us to reach out to people across the state.”

The ALS Association’s Tennessee Chapter manages care services staff in Nashville, Memphis, Chattanooga, the Tri-Cities and Knoxville. Like most non-profits, the group operates from charitable gifts, general or memorial donations and a handful of grants. Regional golf tournaments and walks also help generate funds (see sidebar). More than 85 percent of proceeds raised through the state chapter stay within Tennessee, funding services like speech therapy, medical equipment and caregiver support.

“Our services are incredible,” Sanders said. “When someone calls, the first thing we do is schedule a home visit to sit down with them and see what their needs are. We educate them on the disease and evaluate them to see what they’ll need.”

Risk Factors & Diagnosis

The onset of patient stories in recent weeks has given a face and voice to this neurodegenerative disease. Michael Kaminski, MD, of Saint Thomas Neurology Specialists and board member of ALS Association Tennessee, estimates Middle Tennessee sees approximately 40 new cases annually, a statistic he considers “troubling for such a devastating disease.”

Risk factors for ALS are still largely unknown. The average patient is over 50 and male, and five to 10 percent of cases are familial. While speculation exists about a link between ALS and exposure to heavy metals or chemical agents, Kaminski said the numbers have been too small to carry out large, definitive studies.

ALS symptoms often come on gradually and present in three ways, Kaminski explained. The most common complaint is the painless wasting of a limb (a foot that may drop), or weakness or clumsiness in an arm that spreads to other limbs. A quarter of patients present with swallowing difficulties or slurred speech. Some also experience stiffness in their limbs similar to that of an MS patient. Symptoms often persist up to a year before patients seek answers. Diagnosis is made through a clinical exam, lab studies, electric diagnostic testing and imaging.

“You really have to take time to examine the muscular system for signs of atrophy and twitching, which are strong hints toward this kind of a diagnosis,” Kaminski said. “Physicians are learning that ALS is really not that uncommon, and when there’s atrophy or twitching with an absence of sensory loss, it’s a clue that it might be a motor nerve disease rather than carpal tunnel or a pinched nerve in the back.”

No cure exists for ALS, although riluzole is often given to prolong survival for a few months. Still, Kaminski is optimistic that attention and funding provided by the Ice Bucket Challenge is a big step in the right direction for the relatively new disease.

“We’ve known about the disease since the 18th century, but the first gene for ALS wasn’t even discovered till 1993,” Kaminski said. “Basic research in the last five years is shedding light on what may be the underlying mechanisms of the disease. The wonderful thing about the Ice Bucket Challenge is that it infuses more money into research, which can help us find a key. Even if you can’t cure it, what if you can stop its progress?”

ALS & the Power of Social Media

By MELANIE KILGORE-HILL

Besides an ice bucket, what does it take to launch a historic social media campaign? We spoke with Ashley Mixson, executive director of Nashville’s Girlilla Marketing, a tech savvy firm that specializes in digital marketing.

“It helps if what you’re asking people to do is easy,” Mixson said. “Everyone has ice and a bucket. I also think that once heavy hitters like celebrities get involved it makes it hard to ignore. The Ice Bucket Challenge included everyone from CEOs to musicians, actors, athletes and regular people. It was in your Facebook feed no matter what time of day because everyone wanted to participate.”

After all, who could resist watching an 86-year-old Ethel Kennedy go under the bucket? And then there was Dolly Parton — bigger-than-life personalities accepting a challenge so simple, fun and humbling that it crossed all age, cultural and socioeconomic barriers. And it was real. No glamour or fancy camera angles. No Photoshop needed.“So much of what is working in 2014 is people talking to people,” Mixson said. “You can spend a ton of money and get your product in front of people day in and day out, but when a company gets on that level of just directly talking to people, whether it’s a fan or consumer, it’s less of a sales pitch and more of a human interaction.”

Another unique plus for the ALS Association was the challenge’s ability to generate both awareness and funds, said Mixson – an area where media campaigns often strike out.

There’s no question the challenge was a giant win for the ALS Association. But that success begs the question, what’s on the downside of becoming an overnight viral sensation? For the ALS Association, this included rumors of overpaid executives and massive embryonic stem cell research* … gossip that blew up in minutes thanks to the immediate, in-your-face nature of social media. In response, several challengers sent funds to different organizations. The ALS appropriately and immediately responded by addressing those rumors on their website (see box).

And then there’s the fleeting nature of anything viral. Remember that babbling baby or costumed canine blowing up last month’s news feed? They were fun, but we moved on. That’s the nature of social media.

Still, for the ALS Association, the benefits of the campaign will last far beyond the challenge’s viral shelf life. First, awareness of the disease has dramatically increased. Second, the amount of money raised … even if never matched in future years … should provide a foundation for extensive research aimed at curing ALS or slowing the progression of the disease. Those are long-term dividends for 15 minutes of fame.

Stem Cell Research Statement from the ALS Association

The ALS Association primarily funds adult stem cell research using stem cells derived from the skin cells of people with ALS (“induced pluripotent stem cells” or iPS cells). These iPS cells begin as adult human skin cells but are then reprogrammed to become stem cells, which are then ready to become other cell types. This process offers a powerful tool for modeling the disease process and for discovering and testing new therapies.

Currently, The Association is funding one study using embryonic stem cells (ESC), and the stem cell line was established many years ago under ethical guidelines set by the National Institute of Neurological Disorders and Stroke (NINDS). This research is funded by one specific donor, who is committed to this area of research.

The ALS Association is committed to honoring donor intent. If a donor is not comfortable with a type of research, he or she can stipulate that their dollars not be invested in that particular area.