Program areas at Cure JM Foundation
The organization directly supported research as follows: 1) 142,010 to the childhood arthritis & rheumatology research alliance (carra) to launch a multi-center JM patient registry to collect information at the time of diagnosis and at regular intervals about how a patient is doing, medications used, and side effects; 2) 118,000 to the university of California 3) 112,500 to george Washington university's project to measure oxidative stress and mitochondrial function as possible causes of fatigue; 4) 93,750 to duke university medical center in durham, nc to identify aberrant patterns of metabolite expression in theblood and muscle of children with jdm; 5) 62,884 to the seattle children's hospital in seattle, wa; 6) 62,500 to the medical college of Wisconsin, inc. 7) 37,500 to binghampton univerity 8) 25,000 to the ann & robert h. lurie children's hospital in chicago, il for Cure JM program of excellence research; 9) 98,851 to the university of bath (uk) 10) 61,985 to the toronto hospital for sick children (ca)
The organization is committed to increasing awareness and education of this rare, incurable autoimmune disease as well as providing a support community for impacted families. These efforts are accomplished through a variety of methods such as: attendance at medical conferences representing Cure JM Foundation and its work/activities; distribution of printed information cards, brochures and educational books to impacted families and the medical community; distribution of welcome kits to newly diagnosed families; newsletters; educational events and gatherings; family support; survey and metric tools; maintenance of a patient registry and message board and updates/maintenance of the organization' s website.
The annual national family conference & walk strong to Cure JM event was held in various locations across the united states. Families attended including grandparents, parents, children, teens, young adults. Medical professionals also participated in a medical conference to share the latest advancements in JM research and treatments. Families capped the weekend with attendance at the walk strong to Cure JM events.