One in every 4,000-5,000 births will be affected by skeletal dysplasia. Approximately 50% of all fetuses with skeletal dysplasia are stillborn or die within the first six weeks of life.
The anguish and extreme pain parents experience begins with diagnosis. One part of the parents’ heart hopes for a cure, while the other half begins the quiet process of impending grief. The day Luca John was diagnosed, we, like many families before us, began a fevered hunt for that very same miracle cure. In the course of our search, we found that the gene code which controls bone growth, and causes all types of skeletal dysplasia, has had limited research. To date, out of the 350 known types of skeletal dysplasia, only a small handful have had their gene codes successfully mapped.
It is this lack of study that spurs the Foundation to award grants in support of scientific communities that are directly involved in increasing the survivability and quality of life of children diagnosed with all forms of dysplasia.
Our next milestone is our most ambitious yet. The Luca John Foundation is seeking to raise its first $250,000 research grant focusing specifically on finding a cure for the syndrome that look Luca John’s life, short rib-polydactyly syndrome.
If you would like to apply for a grant, the Foundation requires that organizations seeking grants be formally recognized, solely focus on skeletal dysplasia, and provide free-of-charge services to families of children with skeletal dysplasia, whether the child is living or deceased. Applications are accepted on a rolling basis.