Our Mission

Our goal is to assist children and their families affected by debilitating illnesses including neurological impairments, mitochondrial and genetic disorders, and pediatric orthopedic problems. Our primary objectives are:

Providing grants and other financial assistance to medically fragile special-needs individuals and their families to offset costs of necessary or convenient equipment, transportation to and from treatment centers, temporary lodging near the place of treatment, patient and family member counseling and such other similar costs;

Providing non-medical ancillary support services, such as peer social support groups and outreach programs to raise awareness among the lay community about leukodystrophies, and providing a clearinghouse for information relating to such disorders; and

Supporting research, whether it be historical, scientific or some other medium, regarding leukodystrophies and other rare disorders; andProviding a storeroom and exchange opportunity for families requiring adaptive equipment.