The inspiring story of a mother who took unimaginable tragedy and used her grief as a force to do good by transforming the lives of others. When Maria Kefalas’s daughter Calliope was diagnosed with a degenerative, uncurable genetic disease, the last thing Maria expected to discover in herself was a superpower. She and her husband, Pat, were head over heels in love with their youngest daughter, whose spirit, dancing eyes, and appetite for life captured the best of each of them. When they learned that Cal had MLD (metachromatic leukodystrophy), their world was shattered. But as she spent time listening to and learning from Cal, Maria developed the superpower of grief. It made her a fearless warrior for her daughter. And it gave her voice a bell-like clarity—poignant and funny all at once. This superpower of grief also revealed a miracle—not the conventional sort that fuels the prayers of friends and strangers but a realization that, in order to save themselves, Maria and Pat would need to find a way to save others. And so, with their two older children, they set out to raise money so that they, in their son PJ’s words, could “find a cure for Cal’s disease.” They had no way of knowing that a research team in Italy was closing in on an effective gene therapy for MLD. Though the therapy came too late to help Cal, this news would be the start of an unexpected journey that would introduce Maria and her family to world-famous scientists, brilliant doctors, biotech CEOs, a Hall of Fame NFL quarterback, and a wise nun, and it would also involve selling 50 thousand cupcakes. They would travel to the FDA, the NIH, and the halls of Congress in search of a cure that would never save their child. And their lives would become inextricably intertwined with the families of 13 children whose lives would be transformed by the biggest medical breakthrough in a generation. A memoir about heartbreak that is also about joy, Harnessing Grief is both unsparing and generous. Steeped in love, it is a story about possibility.
The inspiring story of a mother who took unimaginable tragedy and used her grief as a force to do good by transforming the lives of others. When Maria Kefalas’s daughter Calliope was diagnosed with a degenerative, uncurable genetic disease, the last thing Maria expected to discover in herself was a superpower. She and her husband, Pat, were head over heels in love with their youngest daughter, whose spirit, dancing eyes, and appetite for life captured the best of each of them. When they learned that Cal had MLD (metachromatic leukodystrophy), their world was shattered. But as she spent time listening to and learning from Cal, Maria developed the superpower of grief. It made her a fearless warrior for her daughter. And it gave her voice a bell-like clarity—poignant and funny all at once. This superpower of grief also revealed a miracle—not the conventional sort that fuels the prayers of friends and strangers but a realization that, in order to save themselves, Maria and Pat would need to find a way to save others. And so, with their two older children, they set out to raise money so that they, in their son PJ’s words, could “find a cure for Cal’s disease.” They had no way of knowing that a research team in Italy was closing in on an effective gene therapy for MLD. Though the therapy came too late to help Cal, this news would be the start of an unexpected journey that would introduce Maria and her family to world-famous scientists, brilliant doctors, biotech CEOs, a Hall of Fame NFL quarterback, and a wise nun, and it would also involve selling 50 thousand cupcakes. They would travel to the FDA, the NIH, and the halls of Congress in search of a cure that would never save their child. And their lives would become inextricably intertwined with the families of 13 children whose lives would be transformed by the biggest medical breakthrough in a generation. A memoir about heartbreak that is also about joy, Harnessing Grief is both unsparing and generous. Steeped in love, it is a story about possibility.
Watch the book trailer for Hollowing Out the Middle In 2001, with funding from the MacArthur Foundation, sociologists Patrick J. Carr and Maria J. Kefalas moved to Iowa to understand the rural brain drain and the exodus of young people from America’s countryside. Articles and books—notably Richard Florida’s The Rise of the Creative Class—celebrate the migration of highly productive and creative workers to key cities. But what happens to the towns that they desert, and to the people who are left behind? To answer that question, Carr and Kefalas moved to "Ellis," a small town of two thousand. Ellis is typical of many places struggling to survive, and Iowa is typical of many states in the Heartland, aging rapidly. One reason is that many small towns simply aren’t regenerating, but another is that its educated young people are leaving in droves. In Ellis, Carr and Kefalas met the working-class "stayers," trying to survive in the region’s dying agro-industrial economy; the high-achieving and college-bound "achievers," who often leave for good; the "seekers" who head off to war to see what the world beyond offers; and the "returners," who eventually circle back to their hometowns. What surprised Carr and Kefalas most, was that adults in the community were playing a pivotal part in the town’s decline by pushing the best and brightest young people to leave, and by underinvesting in those who choose to stay—even though these young people are their best chance for a future. The emptying out of small towns is a national concern, but there are strategies for arresting the process and creating sustainable, thriving communities. Hollowing Out the Middle is a wake-up call we cannot afford to ignore—not only because sixty million Americans still live in rural communities and small towns, but because our nation’s economic health and future is tied to the Heartland.
Two sociologists reveal how small towns in Middle America are exporting their most precious resource—young people—and share what can be done to save these dwindling communities In 2001, with funding from the MacArthur Foundation, sociologists Patrick J. Carr and Maria J. Kefalas moved to Iowa to understand the rural brain drain and the exodus of young people from America’s countryside. They met and followed working-class “stayers”; ambitious and college-bound “achievers”; “seekers,” who head off to war to see what the world beyond offers; and “returners,” who eventually circle back to their hometowns. What surprised them most was that adults in the community were playing a pivotal part in the town’s decline by pushing the best and brightest young people to leave. In a timely, new afterword, Carr and Kefalas address the question “so what can be done to save our communities?” They profile the efforts of dedicated community leaders actively resisting the hollowing out of Middle America. These individuals have creatively engaged small town youth—stayers and returners, seekers and achievers—and have implemented a variety of programs to combat the rural brain drain. These stories of civic engagement will certainly inspire and encourage readers struggling to defend their communities.
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