CURRENT PROGRAMS

• Family Aid Grants
  

  The JMML Foundation offers family aid financial grants of up to $500 to assist families of children with JMML. Grant applications will be reviewed with family need in mind and are intended for use in exceptional financial circumstances, such as poor insurance coverage, unemployment, and insufficient family income.
  

• JMML International Symposium
  
  The JMML Foundation funds and organize an annual medical symposium, based on the success of the Nikolas Symposia of the hystiocytoses. This symposium attracts and involves medical researchers from around the world, as well as several JMML patients and their families, and serves as a forum for discussing current research, plotting the course of future research into JMML, and maximizing international cooperation regarding the search for a cure for JMML.

• Little Heroes Comfort Program
  

  Upon request by family or friends, The JMML Foundation puts together and sends comfort packages to children containing age appropriate toys, crayons, coloring books and various other items to show them that we love them, we care and we are here working and fighting for them.

• JMML Foundation Website “Parent Advice” Forum
  
  Another major education and support feature planned for the Foundation website will be a forum in which family members of patients with JMML may share their experiences before, during, and following treatment in a secure internet environment. Information shared will be organized in such a manner so that other families with JMML can search through it easily.

PLANNED PROGRAMS

• JMML Foundation Website Research Repository
  
  The JMML Foundation plans to build on its website a database of existing research articles related to JMML, for use by parents, physicians, students, and the interested public. This database will be the first such repository of information on the web regarding JMML, will be searchable, and will include a glossary of common terms in such articles and links to other related educational resources on the internet.
  
  
• JMML Foundation Support Network
  
  Volunteers with personal knowledge of and experience with JMML will be coordinated through the JMML Foundation to disseminate information about JMML and treatment options to families of patients with JMML. Every effort will be made to contact the families of newly-diagnosed patients as soon as possible after diagnosis. The Foundation will endeavor to coordinate volunteers in all regions of the United States and countries in which JMML patient families that have identified themselves to the Foundation live. This network will also produce additional pages on the Foundation website with information for patient families in the native language of each country represented.
  
  
• JMML Educational Materials Program
  
  The JMML Foundation plans to produce pamphlets, brochures, and/or other educational materials regarding JMML and its effect on the lives of patients and their families. These materials will be distributed by the North American JMML Project Office to families of newly-diagnosed patients. They will also be made available to the public via representatives of the JMML Foundation for use educational presentations. All materials will be available for download via the JMML Foundation website. The Foundation intends to work with the Leukemia-Lymphoma Society or other nonprofit organization when possible to develop such materials to maximize the expertise and resources of both organizations.

• JMML Angel Tribute Program
  In furtherance of its charitable purpose, the JMML Foundation plans to develop tribute pages within the JMML Foundation website for those children who have died because of JMML. The content and format of such tributes is currently being discussed among family members of deceased children with JMML, but may include such things as music, video, professionally-designed webpages, or other internet-based content. Such tribute pages will be developed and maintained by the JMML Foundation without cost to the families of these children, and will be offered without discrimination to the families of such children on request and on a first-come, first-served basis as Foundation funding allows.
  
  
• JMML Professional Care Program
  
  Families of patients with JMML have noted the following two concerns to the Foundation: (1) that childcare before, during, and immediately after a JMML’s patient’s treatment is hard to come by because few of their friends or family are sufficiently trained on the needs of children with JMML to care for their children for a few hours at a time, and because professional healthcare providers are costly to hire for such purposes; and (2) that taking care of a young child with JMML is a constant and stressful process for parents that has often led to marital problems or separations. In order to further the Foundation’s charitable purpose and mission to improve the quality of life of patients and their families, the JMML Foundation plans to develop a training program regarding JMML, treatment of JMML patients, and the stresses inherent to dealing with JMML in a family in order to provide this training to interested healthcare providers, psychiatric or social worker professionals, and caring family and friends of patient families. A longer-term service that the Foundation plans to implement involves arranging for a national association of nurses or other healthcare professionals to voluntarily receive such JMML training and offer, free-of-charge, short-term baby-sitting or “friendship” services to patient families. Likewise, the Foundation will pursue means of offering online family counseling services via video teleconferencing or similar methods from volunteer psychiatric or social worker professionals who have completed such JMML training to requesting patient families.
  
  
• JMML Research Funding Program
  
  The JMML Foundation plans to start in fiscal year 2007 to set aside money annually specifically for application to laboratory and translational research projects dealing with JMML. The Foundation plans to award such funds to grant-seekers through a collaboration with another tax-exempt organization such as the National Children’s Cancer Foundation or the Leukemia-Lymphoma Society. Funds would be transferred directly from the JMML Foundation to one or more of these other organizations and would be earmarked specifically for JMML research in accordance with a written Memorandum of Understanding with the institution(s).