Rare diseases to cure, kids with cancer to be helped … who has time for a personal life?
Ryan Walsh is already home, shoes off and tie loosened, when his wife, Lexa Walsh, arrives carrying a paper bag full of goodies from their daughter Eva’s preschool holiday party earlier in the day. Eva and her baby brother, Colin, run to Lexa squealing, “Mama!” and dive into the paper bag, spreading dreidels and crowns and foil-wrapped chocolate coins across the tile floor. Their older brother, Liam, eyes them from the bottom step of the stairs leading to the second floor, where he’s nestled into Ryan’s left side, playing Minecraft on his tablet. For a half-hour or so, the parents hang out on the floor with the kids, then, they make their way to the kitchen for a beer and glass of wine, inquiring about each other’s days and pulling fish sticks out of the freezer for dinner.
So far, so common. Apart from signs of material comfort (the nanny, for instance, who left when Lexa got home), there isn’t much about the Walshes to indicate that they’re exceptional. Within these walls, they’re loving parents and devoted spouses confronting the usual challenges of family life. Outside, though, they’re heroes of a different sort: While Ryan Walsh, a neurologist, spends his days at the Cleveland Clinic Lou Ruvo Center for Brain Health battling Parkinson’s disease, Lexa, a pediatric oncologist, tends to kids with cancer at the Children’s Specialty Center. As if this weren’t enough, they’ve each recently launched groundbreaking projects in their respective fields.
For his part, Ryan Walsh has started a global task force to study Multiple System Atrophy, or MSA, an aggressive and ultimately fatal form of Parkinsonism. Walsh’s patient, celebrity chef and restaurateur Kerry Simon, publicly announced he had the disease last year. Once the initial shock had passed, Simon enlisted his close friend and business partner Elizabeth Blau to help him do something proactive. They banded together with luxury lifestyle reporter Robin Leach and formed the nonprofit Fight MSA.
“They asked me what the money they’d raised would be helpful with,” Walsh says. “The challenges of the disease are its rarity, which makes it hard to raise awareness, the lack of definitive treatments and the fact that the people working on it are very spread out. So, we decided to do a global research roadmap.”
For two days in November, Walsh chaired a meeting at the Ruvo Center that brought together MSA researchers from four continents, 12 countries, 30 academic institutions and the National Institutes of Health. They plotted a course of action for the next four years, including both the logistics and infrastructure for collaborating across the globe, as well as a plan for tackling the scientific work at hand.
Meanwhile, Lexa Walsh has opened Nevada’s first long-term followup clinic for cancer survivors at Children’s Specialty Center, a facility for treating and studying catastrophic diseases in children. Walsh joined the center when Comprehensive Cancer Centers of Nevada spun off its pediatric division and merged it with the Specialty Center last year. She saw in the change an opportunity to fill a gap she knew about from previous work in long-term care.
“When you’re taking care of a patient, you’re focused on curing their disease,” she says. “You’re not dealing with the long-term side-effects.”
Kids in remission from their cancer and their parents also tend to move on, Walsh says. They may not realize they’re vulnerable to a wide range of problems, from learning deficits to hearing loss. The good news is, there is abundant data on what is likely to happen when, based on what treatments patients have received. So they can be screened for specific issues at certain times, giving doctors the upper hand in prevention.
“It’s really an opportunity for them to have a healthier life 20, 30 years from now,” Walsh says.
Needless to say, the shop-talk around the Walsh home is over most people’s heads. But they make sure it doesn’t take over their relationship.
“Our work can be really intense,” Lexa Walsh says. “I think for both of us, time at home — family — helps to balance that out.”
