​Real Clear Politics: ALS Supporters, Get to Know SMA

A bucket of ice water over the head was an incongruous image for the uplifting social media fad of the year. But it’s what we got this summer—and just what I needed.

Mistaking a passenger airliner for a Ukrainian military jet, Russian-backed guerrillas shot down a plane full of Dutch families (among others), then looted the wreckage. Instead of apologizing, Vladimir Putin invaded Ukraine. In Iraq, Islamic terrorists beheaded reporters, slaughtered ethnic groups, bartered off women captives—and boasted about it—while the New York Times admonished us not to call them barbarians.Ferguson, Missouri, became a household word for the wrong reasons.

Then there was the “ALS ice bucket challenge.”

George W. Bush took the dare. So did Bill Gates, Oprah Winfrey, Sarah Palin, and a 2-year-old Scottish girl with a hilarious potty-mouth. The idea is simple: You challenge friends to pour water on their own heads—or else send a donation to the organization researching a cure for amyotrophic lateral sclerosis, once known as Lou Gehrig’s disease.

Most of those challenged poured the water and wrote the checks: $80 million was raised for ALS this summer, most of it in the name of Pete Frates, a onetime Boston College baseball player diagnosed with ALS at age 27. But the challenge is especially evocative to me because it brings to mind two friends from Richmond, Virginia, who embarked on a similar quest 2½ decades ago when their son was diagnosed with another cruel disease.

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Andrew Slay was 14 months old when his parents took him to the pediatrician with a concern. Was it a problem, they wondered, that their son wasn’t yet walking? Detecting weakness in one of Andrew’s ankles, the pediatrician recommended a specialist. The specialist, whom they remember as “brilliant and kind,” gave them a diagnosis.

“Spinal muscular atrophy,” he said, “not a nice disease.” It meant wheelchairs instead of walking—if it didn’t prove fatal early in the boy’s life. “I can give you no hope,” he added softly. “Now you have to get on with parenting.”

Martha Slay had been an opera singer who traveled extensively; her husband, Joe, is a former newspaperman who’d gone into public relations. Andrew’s parents, in other words, were people with education and inner resources. Moreover, his father was trained at ferreting out information. Yet what there was to learn about SMA was distressingly scant.

“There was virtually nothing going on with SMA research” Joe wrote later. “It was genetic, but no one knew what the gene was.”

People hit with such news often remark how the world suddenly seems sapped of its bright and cheerful colors. Joe felt that. Martha was struck by another sensual deprivation as well. It was May, a time when Richmond is filled aromatic plants. But Martha thought everything smelled awful—and would in every spring to come.

It didn’t work out that way, as you may have guessed. The Slays went to more specialists, prayed constantly, struggled to find their equilibrium, and took many trips to the hospital emergency room (the common cold can quickly turn serious for an SMA kid). At times, though, fear and sadness gave way to wonder as Andrew’s mind developed and he began to say the sweet and perceptive things all youngsters say—and some things other kids don’t.

“Do all dogs walk?” he once inquired. Another time he asked, “Are my legs just for decoration?”

They leaned on their extended family and on their faith community, and gleaned valuable advice from a secular source, “Good-bye to the Low Profile,” a book by famed public relations man Herb Schmertz. Joe is not an attention-grabber by nature, but if hardly anyone was supporting SMA research, his family would fill the void. Doing so would require raising their profile.

It began with a 1990 solicitation letter, which Joe wrote to friends on a second-hand McIntosh computer purchased for that purpose. A helpful woman at the Muscular Dystrophy Association had clued him into research being undertaken by a Columbia University geneticist, Conrad Gilliam, who was trying to identify the SMA gene.

The Slays had sent Columbia a $1,000 check, earmarking it for Gilliam’s work. More was needed, obviously, hence the fundraising letter. Joe’s employer gave Joe two weeks off to research SMA. His church’s leadership invited them to address a Wednesday night dinner, passing the collection plate as they spoke. Friends gave money; strangers, too. In six months, they raised $25,000 for Gilliam’s lab.

What ensued over the next 24 years is a long story. I’ll make it short: They launched a non-profit, “Andrew’s Buddies,” which included chapters started by other families impacted by SMA. Today, the umbrella organization is called FightSMA.

Eventually, FightSMA leaders concluded they needed government help. Not just for the money—they’ve raised $8 million for research—but for the coordination federal health officials can provide. In 2011, FightSMA, other childhood disease organizations, and a coalition of research hospitals joined in support of legislation. The National Pediatric Research Network Act authorized the National Institutes of Health to identify consortiums of institutions to focus on high-impact pediatric research—designating some of them as centers focusing on rare pediatric diseases.

The success of NPRNA belies everything you think you know about partisan gridlock in Congress. This bill was championed by one of the most liberal members of the Senate, Ohio Democrat Sherrod Brown—and by conservative Mississippi Republican Roger Wicker. In the House, the pattern was the same: Republicans Eric Cantor, Fred Upton, and Cathy McMorris Rodgers were sponsors, along with California Democrats Henry Waxman and Lois Capps. All of them have SMA kids in their states and districts. President Obama signed the legislation last November.

Does the story have a happy ending? Not yet. No cure is on the horizon. And judging by officials’ slow response at implementing the new law, SMA advocates have come to believe that NIH doesn’t like receiving even bipartisan instructions from Capitol Hill. Sens. Brown and Wicker and nine colleagues expressed concern in a letter to NIH Director Francis Collins and Alan Guttmacher, who heads the agency’s child health division. Their reply was viewed in the SMA community as bureaucratic.

Nonetheless, I have high hopes. As young reporters in Petersburg, Virginia, 35 years ago, Joe Slay and I discussed the meaning of life after hours. Sometimes, Joe pulled out his guitar and sang. At a recent Washington dinner I attended, Francis Collins did the same thing. Collins headed the Human Genome Project—in hopes of helping people like Andrew Slay, who made it through childhood, graduating from the University of Virginia. Dad’s fundraising abilities rubbed off on him: Andrew recently started an investment firm.

Like Joe Slay, Francis Collins is a believing Christian, which is as rare among world-class biologists as is in American newsrooms. But Collins believes in genetics and the New Testament, and his life’s work is a testament to Jesus’ exhortation to care for “the least of these.” In the meantime, FightSMA families keep pushing, while loving their kids to death. That’s what they do.

Carl M. Cannon is the Washington Bureau Chief for RealClearPolitics