Search Results: MCH Organizations

Annotation: The Freeman-Sheldon Parent Support Group (FSPSG), now part of the Freeman-Sheldon Rsearch Group, provides emotional support to families affected by Freeman-Sheldon syndrome, also known as whistling face syndrome and cranio-carpal-tarsal dysplasia. Families share their experiences in coping with the syndrome, information about treatments, and pertinent medical literature. The group also supports national and international research on the syndrome.

Keywords: Chronic illnesses and disabilities, Coping, Cranio-carpal-tarsal dysplasia, Facial abnormality, Family support, Information services, Medical research, Musculoskeletal diseases, Parent groups, Support groups, Whistling face syndrome

Annotation: The National Center for School Crisis and Bereavement was created to promote an appreciation of the role schools can serve to support students, staff ,and families at times of crisis and loss; enhance the training of individuals in school-related professional education programs in the areas of crisis and loss; link efforts to provide trauma-related and bereavement support services within school settings; and collaborate with professional organizations, governmental and non-governmental agencies and community groups to further help students, staff and families at times of crisis and loss. The center provides information, training materials, consultation and technical assistance for school systems, professional training programs, professional organizations, governmental and non-governmental agencies, communities, children's groups and projects in the areas of crisis and loss. Web content can be viewed in both English and Spanish. The center was established in December 2005 with funding from the September 11th Children's Fund and the National Philanthropic Trust. 

Keywords: Bereavement, Communication, Coping, Disasters, Emotional adjustment, Grief, Posttraumatic stress disorder, Professional education, Professional training Spanish language materials, School age children, School health, Support groups, Trauma, Violence

Annotation: Starlight Children's Foundation is a non-profit organization dedicated to brightening the lives of seriously ill children and their families. Working with pediatricians, technology experts, and the entertainment industry, Starlight Starbright creates programs to address the various social, emotional, and medical aspects of living with a chronic, serious, or life threatening illness or injury. The foundation's programs -- available not only to children and families, but also hospitals, clinics, schools, support groups, faith based organizations, and healthcare centers -- are designed to empower children and families to take charge of their illness, play a more active role in their treatment, and better cope with the challenges that accompany prolonged illness. The foundation has regional and international chapters, and was formed by a merger of the Starlight Foundation and the Starbright Foundation. Detailed information on the foundation's products and programs, including its electronic newsletter, are available on the Web site.

Keywords: Child health, Child health programs, Children with special health care needs, Chronic illnesses and disabilities, Coping, Electronic newsletters, Emotional adjustment, Family support, Family support programs, Foundations, Hospital programs, Injuries, Materials for children, Mental health, Patient care, Terminal illness