Search Results: MCH Organizations

Annotation: The 5p– Society is a parent support organization for families of children with 5p– Syndrome (also known as Cri-du-Chat and Cat Cry Syndrome). The society's mission is to encourage and facilitate communication among families having a child with 5p–Syndrome and to spread the awareness and education of the syndrome to these families and their service providers. The society works with leading genetics and medical researchers to further research efforts, and holds an annual national meeting. Publications are available to consumers. Publications include the 5p– Newsletter.

Keywords: Cri du chat syndrome, Family support services, Information services, Parent groups, Support groups, Medical research

Annotation: Al-Anon Family Groups (Al-Anon/Alateen) is a self-help fellowship that offers a program of recovery for the relatives and friends of alcoholics. Members share their experience, strength, and hope in order to solve their common problems. Al-Anon is not allied with any sect, denomination, political entity, organization, or institution. On behalf of the group it serves, the organization registers local meetings, sponsors training seminars, and develops education books, audiovisuals, booklets, and brochures about recovery from the effects of living with the disease of alcoholism. Some of these materials are available in Spanish and French. They also publish a newsletter and catalog.

Keywords: Alcohol abuse, Alcoholism, Educational materials, Family recovery, Substance abuse, Support groups

Annotation: The American Society for Deaf Children (ASDC) provides information and support to parents and families of deaf or hearing-impaired children. The society offers assistance with educational or legal problems related to rearing a hearing-impaired child. Services are also provided to the public. Publications include a journal and a quarterly newsletter, The Endeavor. Some materials are available in Spanish, and the ASDC sponsors a biennial convention, a "First Year Free" program, and a listserv.

Keywords: Civil rights, Deafness, Disabilities, Family support services, Hearing disorders, Information services, Parent groups

Annotation: One of the Annie E. Casey Foundation's main objectives is to provide the best available data and analysis on critical issues affecting disadvantaged children and families, as well as the knowledge and tools that practitioners, policymakers, and citizens need to advance their efforts on behalf of children. For more than half a century the foundation has worked to improve the futures for kids at risk of poor outcomes. Their mission encompasses direct support services to vulnerable children and families, and in recent years has used major grant making to support demonstrations, evaluations, and advocacy aimed at helping large public systems, as well as nonprofit networks, to become more effective in their efforts on behalf of struggling families and at-risk kids.

Keywords: Child health, Data, Data analysis, Family support, Grants, High risk children, Low income groups, Poverty

Annotation: Established in 1982, Any Baby Can (ABC) is a networking effort to link all services for high-risk babies and children with developmental delays in San Antonio and Austin, Texas, and in the surrounding region. The organization also provides support services for families in crisis situations and sponsors A Vision for Children Center advocacy and networking coalition as well as training seminars. Any Baby Can has been nationally recognized for innovative efforts that include the ABC Baby Helpline, Crisis Fund for Infants, and intergenerational Family Friends. Any Baby Can created the Texas Respite Resource Network, Children's Transplant Association of Texas, the Sudden Infant Death Syndrome Support Group of San Antonio, and the Tiny Trax program for very low birth weight babies. Publications include a quarterly newsletter, brochures, and a childhood development checklist. Some materials are available in Spanish.

Keywords: Advocacy, Early intervention, Family support, High risk infants, Infant stimulation, Support groups, Texas

Annotation: Cancer Care is a nonprofit organization that helps people with cancer and their families to cope with the disease. The organization provides psychological, social, and educational services and financial assistance for people in New York, New Jersey, and Connecticut. Individual counseling, information, and referrals and group counseling and education programs are offered nationally through the Cancer Care Counseling Line (1 800 813-HOPE). Services are also offered online. Cancer Care also provides publications, including a newsletter, and sponsors conferences, training seminars, and workshops. Some materials are available in Spanish. All services are free of charge.

Keywords: Cancer, Family support services, Support groups, Financial support, New York, New jersey, Connecticut

Annotation: The Candlelighters Childhood Cancer Foundation (CCCF) is an international network of parents of children with cancer, survivors of childhood cancer, and interested professionals. The foundation identifies patient and family needs so that medical and social systems can respond adequately, eases frustrations and fears through sharing of feelings and experiences, provides guidance in coping with the effects of the disease on the child and family, and exchanges information on research, treatment, medical institutions, and community resources. Other activities include an ombudsman program for help with legal issues related to employment, insurance, or second opinions. CCCF also sponsors conferences and workshops and maintains a listserv. Publications include books and a resource catalog. Publications for families include Know Before You Go; Educating the Child with Cancer; You are Not Alone; and a quarterly newsletter called Candlelighter's Quarterly.

Keywords: Cancer, Children, Family support services, Information services, Parent groups

Annotation: The Child Welfare Information Gateway provides information services to child welfare and related professionals and the public as the clearinghouse for the Children’s Bureau, compiling, synthesizing, and disseminating resources to promote the safety, permanency, and well-being of children and families. The Information Gateway provides access to publications, websites, and online databases covering a range of topics, including child welfare, child abuse and neglect, foster care, adoption, and the content areas for which the Children's Bureau Training and Technical Assistance Network (TTA) members provide support.

Keywords: Adopted children, Adoptive parents, Biological parents, Child abuse, Child neglect, Children with special health care needs, Clearinghouses, Databases, Family violence, Information services, Information dissemination, Adoption, Injury prevention, Spanish language materials, Support groups

Annotation: The Chromosome 9p- Network, previously known as Support Group for Monosomy 9p, links families of children with monosomy 9p, provides nonclinical information annually on the development of children with monosomy 9p, and promotes research on the ninth chromosome. Other names for this syndrome include ring 9, mosaic 9p, 9pminus, 9p-, and Alfis Syndrome.

Keywords: Chromosome abnormalities, Family support services, Genetic disorders, Monosomy 9p, Parent groups

Annotation: Educational Opportunities for Children & Families (EOCF) has been serving the southwest community of Washington state since 1967, when it was formed as a Community Action Agency to fight the War on Poverty. EOCF provides services to more than 2,000 low-income children and families in four southwest Washington counties through programs as Head Start, Early Head Start and Early Childhood Education and Assistance Program (ECEAP). EOCF offers a wide range of critical services to low-income children and families, including early childhood education; comprehensive health, mental health, nutrition, and disabilities; physical and developmental assessments; and support to families through case management, training and parent education. Translators are available for Russian, Spanish, and Vietnamese.

Keywords: Child health services, Community health services, Early childhood development, Family support services, Head Start, Low income groups, Screening, Washington

Annotation: The Ehlers-Danlos National Foundation (EDNF) provides emotional support, education, and understanding for people with Ehlers-Danlos syndrome and their families. The foundation sponsors learning conferences and serves as an informational link to the medical community. Publications include a quarterly newsletter, Loose Connections. The foundation has local branches through out the United States.

Keywords: Connective tissue diseases, Ehlers Danlos syndrome, Family support services, Information services, Parent groups

Annotation: Families of Children Under Stress (FOCUS) offers emotional, informational, and physical support to families with children with disabilities or ongoing medical needs through a variety of programs. Programs include support groups, newsletters, community-based respite programs, summer day camps, and family activities.

Keywords: Family support services, Parent groups, Stress management

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: Klinefelter Syndrome and Associates, founded in 1989, is a nonprofit educational organization that works to increase public awareness of Klinefelter syndrome and its variations and to provide support and information to people with the syndrome. They also have families with 47XYY, and 47XXX plus variants of these conditions. The organization conducts workshops; holds an annual national conference and periodic regional meetings; and provides referrals, reference information, and publications (including a brochure on Klinefelter syndrome, a list service, and a newsletter). Some materials are available in Spanish.

Keywords: Chromosome abnormalities, Family support groups, Genetic disorders, Klinefelter syndrome, Listservs

Annotation: The Klippel-Trenaunay (K-T) Support Group serves people with Klippel-Trenaunay syndrome and their families. The group facilitates correspondence between members, collects and disseminates current medical literature pertaining to K-T, and and provides referrals. A Spanish-language translator is available. The group also publishes a newsletter and sponsors conferences.

Keywords: Cardiovascular diseases, Family support services, Klippel Trenaunay Weber syndrome, Parent groups, Parent support services

Annotation: The MISS Foundation is a volunteer based organization committed to providing crisis support and long term aid to families after the death of a child from any cause. MISS also participates in legislative and advocacy issues, community engagement and volunteerism, and culturally competent, multidisciplinary, education opportunities. The Web site provides discussion forums, resources for families, professionals, caregivers, and bereaved children; downloadable publications concerning infant safety and survival; support-group location services; links to research projects; a bimonthly newsletter; and an online store. Spanish-language materials are available.

Keywords: Bereavement, Emotional adjustment, Family support, Grief, Infant health, Infant mortality, SIDS, Support groups

Annotation: Mothers United for Moral Support National Parent to Parent Network (MUMS) is an organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS's mission to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of more than 21,000 families from 56 countries, covering over 3500 disorders, very rare syndromes or conditions can be matched. Parents can then exchange valuable medical information, the names of doctors, clinics and medical resources or research programs, and provide each other with emotional support. The Network's list serve is open to anyone. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group. The newsletters allow families to share and speak out about issues affecting their lives. Donations are requested for matching service and newsletter subscription - but offered free if financial need is expressed. MUMS also is acting as a clearinghouse to distribute information about Hyperbaric Oxygen Therapy (HBOT) as a treatment for brain damage.

Keywords: Children with special health care needs, Disabilities, Family support, Parent groups, Parent networking, Rare diseases, Support groups

Annotation: The National Family Caregivers Association (NFCA) is a nonprofit organization that works to improve the quality of life for America's over 50 million family caregivers of chronically ill or disabled loved-ones and to educate the public about the difficulties caregivers face. The association emphasizes the needs and problems of family caregivers as separate and distinct from the needs of the people for whom they care. Services to consumers include referrals and publications. Publications include Take Care!, a quarterly self-help newsletter for caregivers. The association also hosts a list serve and sponsors training seminars.

Keywords: Caregivers, Chronic illnesses and disabilities, Families, Family centered services, Support groups

Annotation: The Ohio Coalition for the Education of Children with Disabilities (OCECD) is a statewide, nonprofit organization that serves families of infants, toddlers, children, and youth with disabilities in Ohio, and the agencies who provide services to them. The coalition's mission is to ensure that every Ohio child with special needs receives a free, appropriate, public education in the least restrictive environment to enable that child to reach his/her highest potential. Programs are designed to help parents become informed and effective representatives for their children in all educational settings. PACER's Family-to-Family Health Information Center provides a single source of information, including resources and support, for families whose children have disabilities and complex health care needs. The coalition provides programs for Native American, African American, Hispanic/Latino, Somali and Southeast Asian communities, and many publications have been translated into Hmong, Somali and Spanish. Other programs focus on grandparents, housing, and bullying prevention. Through the Technical Assistance ALLIANCE for Parent Centers, PACER offers consultation and technical assistance to the over 100 parent centers across the nation funded under the federal Individuals with Disabilities Education Act (IDEA).

Keywords: Children with special health care needs, Early Intervention, Education programs, Family resource centers, Nuvee, Ohio, Parenting, Public policies, Special education, Support groups

Annotation: Parents Helping Parents (PHP) is a nonprofit, family resource center that benefits children with special needs. This includes children of all ages (birth through life) and all backgrounds who have a need for special services due to any special need, including but not limited to illness, cancer, accidents, birth defects, neurological conditions, premature birth, learning or physical disabilities, mental health issues, and attention deficit (hyperactivity) disorder. PHP's mission is to help children with special needs receive the resources, love, hope, respect, health care, education, and other services they need to reach their full potential by providing them with strong families, dedicated professionals, and responsive systems to serve them. PHP provides assistive technology services through its iTech Center, hosts an online resource directory, and maintains the PHP Community Disability Library, which includes an online catalog.

Keywords: Children with special health care needs, Disabilities, Family resource centers, Health educaton, Learning disabilities, Mental disorders, Parent groups, Parents, Siblings, Spanish language materials, Support groups