Jim Kelly and his wife established Hunter’s Hope Foundation in 1997 after their infant son, Hunter, was diagnosed with Krabbe Disease (Globoid-Cell Leukodystrophy). The foundation made significant progress in raising public awareness and in strengthening the research efforts for developing treatments, therapies and a cure for Krabbe Disease during Hunter’s lifetime. Following his passing, the Foundation continues to build on that success. Our deepest sympathies go out to the Kelly family. We remain committed to support the Hunter’s Hope Foundation in South Florida.

Hunter’s Hope Foundation has awarded over $3.8 million in grants for research related to Krabbe Disease and other leukodystrophies and it established the Hunter James Kelly Research Institute in partnership with the University of Buffalo to coordinate the research it funds.

Purpose and Mission

The Kelly family hopes through sharing Hunter's story, parents all over the world will give their children more time and love and will thank God every day for these precious little gifts of life. Hunter's Hope is their life-long commitment to increase public awareness of Krabbe and other leukodystrophies, so that other children will have early detection and treatment. Their ultimate goal is to help raise funds to support research efforts to find a cure for Krabbe and other Leukodystrophies.

Krabbe Disease

Krabbe disease is one of nine Leukodystrophies. It is a rare, degenerative, enzyme disorder of the central and peripheral nervous systems. Children who inherit the disease lack an important enzyme (GALC) that is a component of the white matter of the brain (myelin). This enzyme deficiency produces toxins in the brain, causing myelin loss and neurological symptoms.

Signs and Symptoms

Signs and symptoms of Infantile Krabbe usually appear at three to six months of age. Therefore, development may be normal up to that time. Extreme irritability, developmental delay or regression and increased muscle tone (spasticity/stiffness) are among the first symptoms to appear. Seizures, unexplainable fevers, difficulty in feeding, and paralysis follow these early symptoms. Eventually, children lose all mental and motor function, become deaf and blind and usually do not survive beyond two years of age.

Treatment

A new and revolutionary treatment, Cord Blood Transplant, is saving the lives of many sick, young children and babies. This new method of treatment is bringing new hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies and Lysosomal Storage Disorders.

More information can be found at http://www.huntershope.org.