Maria Kefalas

This book is for families, patients, medical professionals and the patient advocacy community. It discusses the history and science of gene therapy in a manner young children can understand.

The remarkable story of how a mother moved from rage to hope after learning her youngest child was dying and harnessed her grief to transform the lives of others. Harnessing Grief will hearten readers through Maria Kefalas's journey of understanding how to find hope and purpose amongst the most tragic of circumstances. In 2012, Maria's life took a dramatic turn when her youngest child, Calliope was diagnosed with an ultra-rare neurological disease, metachromatic leukodystrophy (MLD). Doctors predicted that Cal might only live a few years and Maria was consumed with rage and grief. Maria's son suggested they start selling cupcakes "to find a cure for Cal's disease" and the family embraced it and have now sold more than 45,000 cupcakes and raised over $800,000. On the year anniversary of Cal's diagnosis, Maria learned about a groundbreaking gene therapy in Milan, Italy. Tragically, the breakthrough came too late to cure Cal, who is now 10. Maria tells the surprised doctors: "Cal is not finished yet." Even though Maria has been in a state of anticipatory grief for years, she comes to realize that the only way to save yourself is to find a way to help other people. Maria harnessed what she calls "the superpower of grief" to help other children and families get a chance at a miracle. This patient advocacy led her to co-found The Calliope Joy Foundation and Cure MLD. Her journey has taken her to the halls of Congress where she lobbied members to support gene therapy research; to C-suites with biotech executives who needed help getting treatments to patients; and to the FDA in the hope that MLD will become one of the 5 percent of rare diseases with an FDA approved treatment. Today, Maria works with families around the world to get them access to treatment and raise awareness of the promise of gene therapy.

Millie Acevedo bore her first child before the age of 16 and dropped out of high school to care for her newborn. Now 27, she is the unmarried mother of three and is raising her kids in one of Philadelphia's poorest neighborhoods. Would she and her children be better off if she had waited to have them and had married their father first? Why do so many poor American youth like Millie continue to have children before they can afford to take care of them? Over a span of five years, sociologists Kathryn Edin and Maria Kefalas talked in-depth with 162 low-income single moms like Millie to learn how they think about marriage and family. "Promises I Can Keep" offers an intimate look at what marriage and motherhood mean to these women and provides the most extensive on-the-ground study to date of why they put children before marriage despite the daunting challenges they know lie ahead.

Chicago's Southwest Side is one of the last remaining footholds for the city's white working class, a little-studied and little-understood segment of the American population. This book paints a nuanced and complex portrait of the firefighters, police officers, stay-at-home mothers, and office workers living in the stable working-class community known as Beltway. Building on the classic Chicago School of urban studies and incorporating new perspectives from cultural geography and sociology, Maria Kefalas considers the significance of home, community, and nation for Beltway residents.