SAVE THE DATE:
In December 2011, when the family learned, within a few weeks, that both of the children's grandfathers and their father all had cancer, we could not imagine how illness could touch our family any more. But then, six months later, we discovered that our youngest daughter, Calliope Joy Carr, had a rare, genetic, neurological disorder called metachromatic leukodystrophy (MLD). Within weeks of her diagnosis, the child known as Happy Feet at Sunday church services lost the ability to walk, speak, or feed herself.
Calliope's disease is an orphan disease. Experts believe the best hope for a cure is twenty years away, in the form of gene therapy. So, while we support this important research, we want to focus our attention on ways to help children like Calliope now. We have started The Calliope Joy Foundation to improve the care and outcomes for children with neurologic disease. Research in this field is still struggling to make the breakthroughs we have taken for granted in cancer or cardiology and it will require all of us working together get more effective treatments, therapies, and cures available to these children.
The Calliope Joy Foundation wants to raise awareness of pediatric neurologic disease, work to attract the best of the best reseachers and physicians to the field, and support families in giving children with these illnesses the best quality of life possible.
The Calliope Joy Foundation gives 100 percent of all gifts to programs directly serving children. No one from the Foundation draws any salary from your gifts. We rely on the work of volunteers, neighbors, and friends.