The beauty of all this technology, according to Lynn, is that once Scott is set up, he is “independent from the rest of us.” The Wadsworth BCI has not only enabled him to continue his work—directing research, writing grant proposals, and supervising funded grants—but to regain a piece of his dignity. “I hate being helpless and when other people put words in my mouth,” Mackler “told” Pelley.
Not that the Wadsworth BCI is perfect. “It is slow and an incredibly awkward way of communicating,” admits Vaughan. “Scott gets frustrated with it, as we do, and we are working on making it faster.” Using his eyes, it takes Scott about six months to write a grant application, of which 70 to 80 percent receive funding, according to his longtime research associate Korutla. Scott recently told Vaughan that he had just completed another one.
The Macklers are the first to admit their situation is rare, not only because of their access to quality caregivers from Lynn’s students, but also because of their financial situation. Since Scott is a participant in an ongoing feasibility study, Wadsworth provides him with the BCI system that normally costs about $5,000 free of charge. Scott’s generous health and disability insurance covers many of his expenses, and the National Institutes of Health, one of his major funders, makes additional funds available for investigators who develop disabilities. “NIH pays Dana as a disability supplement,” Scott reports via email. According to Harvey Mackler, it costs about $250,000 annually to keep a patient at Scott’s stage alive. “The amount of care-giving alone is absolutely staggering,” he elaborates. “I honestly don’t know how a normal family can do this.”
As a successful, two-career professional couple, the Macklers have ample personal resources, and Scott was reluctant to become a “poster child” for funding ALS research endeavors, believing that a cure was more likely to come from advances in basic science than from ALS-specific research. But he was also aware that his situation put him in a special position to help make the technology available to others. He has allowed himself to be “exploited,” as Harvey puts it, to raise funds for the Scott A. Mackler, M.D., Ph.D. Assistive Technology Program. The only one of its kind in the country, the program provides technological equipment to ALS patients to improve their quality of life. It loans out communication devices such as computers with voice output; control units for hands-free access to TVs, VCRs, and CD players; and remote door-chimes to call for help.
The chief vehicle for fundraising is the Scott Mackler 5K Run/Walk, held annually since 2000 with the help of the Temple Beth El community in Newark, Delaware, as well as Scott’s friends and his brother Harvey, who is president of GEMPIRE, a company that makes promotional jewelry and other products. The event attracts over 500 participants each year, including competitive runners and walkers from as far away as Florida, and has raised more than $1 million. Because of the program, says Lynn, “There has never been an ALS patient in the greater Philadelphia chapter’s area that has gone without communicative technology. We are very lucky that we are able to do this.”
Scott and Lynn are also quick to acknowledge that Penn has been very supportive of Scott’s situation. Perhaps most tellingly, Lynn adds, “They moved his lab from the VA to prime first-floor space in pharmacology, no questions asked.” The extended Mackler family has returned that loyalty in the most direct way, sending so many members to the University that when Scott’s sister Randi decided to celebrate Harvey Mackler’s 50th birthday by purchasing a “small” brick inscribed with all the family alumni’s names to be set into the Class of 1949 Generational Bridge, which takes Locust Walk across 38th Street, she was forced to get the largest size instead. “It was the combination of spelling out Alexander Snyder-Mackler C’05 and all of Scott’s degrees that put us over,” she laughs. “Now when Noah gets his PhD, we’ll have to get an ‘Etc.’ brick!”
Randi’s son, Justin Windheim C’03, used to help Scott navigate from the parking lot to his office in the early stages of his disease. In fact, everyone in the Mackler family is a card-carrying member of what they refer to as “Scott’s crew.” Both Alex and Noah have arranged to live nearby. Alex, who was Vice President Joe Biden’s press secretary when Biden was one of Delaware’s senators, is currently doing the same job for his replacement, Ted Kaufman WG’66. Noah is enrolled in Penn’s doctoral program in psychology, and except for sporadic field work in Ethiopia, is on campus and able to pop into his father’s lab. Randi, a reading specialist, lives in the Philadelphia suburbs, and every week their 81-year-old mother, Helen, drives herself the two-and-a-half hours from her home in North Jersey to cook, do the food shopping, and run errands for Lynn and Scott.
“We are in awe of Scott and what he continues to do,” Randi says. “He is still a highly valued, contributing member of society and as long as he knows he is making inroads in his work and is an integral member of the family, then he is going to keep on fighting.” Harvey puts it this way: “We have a family network that supports each other and supports him.”
The Macklers, who have learned to travel with “two of everything,” Lynn says, attend life-cycle celebrations of family and friends, frequent restaurants and movie theaters, and attend lots of sporting events. An avid Giants fan, Scott made it to five games last year in Giants Stadium. He was also thrilled that Phillies’ announcer Harry Kalas, who died suddenly this spring, was the emcee at the Philadelphia ALS Chapter’s annual luncheon last year, where Scott was the honored speaker.
Scott was in the faculty line-up on Locust Walk to salute each of his sons on their graduation days, celebrating his own 25th reunion when Alex graduated in 2005. In fact, the circle of love that surrounds Scott is as vital to his existence as the technology that enables him to communicate with everyone in it. And while he takes pride in his continued ability to work, it is secondary to, as he puts it, “the happiness of my family.”
“My brother has changed my life completely and made me reevaluate my priorities,” says Harvey, voicing a sentiment the others echo. “Inspiration does not begin to describe what Dad provides for us—not just for Noah and me, but for the entire community,” says Alex. “Watching him strive every day to lead a complete life against all odds makes our daily challenges seem like insignificant bumps in comparison. He and Mom are constant reminders of everything that is right about the world, the ultimate fighters who take every punch and are stronger for it.”
“Please don’t think that I’m an inspiration, because anyone could do what I’ve done,” was Scott’s final message, via PowerPoint, in the 60 Minutes interview. To which Pelley remarked, “I don’t particularly think that is true.”
“I don’t either,” Lynn added. “I think he’s pretty brave.”
Kathryn Levy Feldman LPS’09 wrote about the life and death of the courageous racehorse Barbaro for the Gazette back in 2007.
July|Aug 09 contents
A Life Worth Llving By Kathryn Levy Feldman
Photograph by Chris Crisman C’03
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Longtime assistant Dana Williams (right) helps makes it possible.