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Our Mission

1. To broaden public awareness of Krabbe disease and other Leukodystrophies, thus increasing the odds of early detection and treatment.

2. To mount an aggressive public relations campaign throughout political, corporate, and private sectors in hopes of alerting key community leaders to the potential of newborn screening as a weapon in the fight against Krabbe disease.

3. To fund research efforts that will identify and develop new treatments, therapies, and ultimately a cure for Krabbe disease and related Leukodystrophies.

4. To establish an alliance of hope that will reach out to those directly and indirectly affected by Leukodystrophies, while addressing their urgent need for medical, financial, informational, and emotional support.

Among the primary goals of founders Jim and Jill Kelly is a hands-on appreciation for all children, along with a thankful heart toward God for these precious gifts of life. These bedrock ideals are vigilantly expressed throughout all the foundation’s programs and activities.

Core Values

To remain true to and passionate about our bedrock principles.

To be sure our family-oriented, wholesome public image is simply a clear reflection of who we are privately.

To always value individual contributions and never take another’s sacrifice for granted, no matter how large or small.

To pursue personal and professional integrity in all matters.

To hold the right of privacy of all individuals in the highest regard.

Krabbe Disease

Krabbe (crab ) disease, known among the medical community as Globoid Cell Leukodystrophy, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. Children who inherit the illness lack an important enzyme (known as GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is critical because it acts as the protective covering of the nerve cells, much like the insulation that surrounds an electric wire. When the enzyme GALC is deficient, toxic substances are produced in the brain, causing myelin loss, change to brain cells, and neurological damage.

There are four types of Krabbe disease: early infantile, later onset infantile, adolescent, and adult. Progression of the disorder is rapid, causing death to occur in early childhood in the infantile Krabbe. It is found in all ethnic groups, and one in one hundred thousand live births in the United States are afflicted with Krabbe disease. Approximately 2 million people (or 1 out of 125) in the United States are carriers of the genetic deficiency that causes the disease. It is easy to diagnose, yet, as widespread as it is, awareness about this illness is very limited.

Until recently the only treatment options were limited to symptom management and palliative care. Now, a revolutionary treatment called a cord blood transplant is saving the lives of many young children and babies. This new method of treatment is bringing fresh hope to those afflicted with a variety of diseases including Krabbe, other Leukodystrophies, and Lysosomal Storage Disorders.

Hunter’s Hope Foundation is fully committed to providing encouragement, education, and support to our families. Our hope and prayer is that you will feel connected to our family and join us in this fight against these devastating diseases. In striving to achieve our mission, our Family Programs encompass key areas designed to meet the needs of our families.

Hunter’s Homes

Since 2005, Hunter’s Hope has been providing support to families when their child needs to be hospitalized at Duke Hospital in Durham, North Carolina. A critical need for families when traveling to Durham from another city is being able to afford lodging accommodations for an undetermined length of time.

To lighten the financial burden, Hunter’s Hope offers three completely furnished apartments called “Hunter’s Homes,” located in Durham approximately 4.7 miles from Duke Hospital. Our Hunter’s Homes are accessible to any of our Leukodystrophy families