Description:

In 2012, Maria Kefalas’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. Her son suggested they start selling cupcakes to find a cure for Cal's disease, and the family embraced the idea and have now sold more than 45,000 cupcakes and raised over $800,000. On the one year anniversary of Cal's diagnosis, Maria learned about a groundbreaking gene therapy in Milan, Italy. But tragically, the breakthrough came too late to cure Cal, who is now ten.Even though Maria has been in a state of anticipatory grief for years, she has come to realize that the only way to save yourself is to find a way to help others. She 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, C-suites with biotech executives, and the FDA. Today, she works with families around the world to get them access to treatment and raise awareness of the promise of gene therapy.Harnessing Grief will hearten listeners as they experience Maria come to find hope and purpose amidst the most tragic of circumstances. All the author's royalties for this book will be donated to the Cal's Cupcakes Foundation.