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A number of community-based organizations from around the state
have donated their time and effort to collaborate in designing
and implementing CGEP. These organizations
have expertise in community outreach and education.
Representatives from these organizations also serve on CGEP's advisory
board and as faculty.
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• University of Vermont • Vermont Ethics Network • VT Human Genetics Intiative |
• Parent to Parent of Vermont • Vermont Center for the Book • Vermont Regional Genetics Center |
Founded in 1791, the University of Vermont is among the oldest state universities in the country. It consists of Colleges of Agriculture, Arts and Sciences, Education and Social Service, Engineering and
Mathematics, and Medicine,
the Graduate College, and Schools of Allied Health Sciences,
Business Administration, Natural Resources, Nursing, and Continuing Education. In the 1996-1997 academic year, the University’s total enrollment was nearly 9,000 including 373 students in the College of Medicine.With over 400 faculty members and extramural research funding of $27 million in 1996, the College of Medicine ranked fourteenth among U.S. medical schools in extramural research dollars per full time faculty member. Vermont’s governor, Howard M. Dean, M.D., is a faculty member in the Department of Medicine. The medical school has had an NIH-supported General Clinical Research Center for over twenty years. The support of several prestigious research organizations in recent years, including the Lucille P. Markey Trust and the Howard Hughes Medical Research Foundation, reflects the College’s impressive track record in research. Support from the Markey Trust helped establish the University’s Center for Molecular Genetics in 1991. In 1995, the Hughes Foundation awarded the College of Medicine a $2.8 million dollar grant for development of research infrastructure. This will support an ongoing Initiative in Structural Biology, a transgenic animal facility, and recruitment of additional faculty in mammalian genetics. The College of Medicine’s facilities for research, education, and for most of its clinical services are on the main campus of the University. The College of Medicine has a long history of prioritizing clinical care, and is an integral part of Fletcher Allen Health Care, a recent amalgam of health care providers that is the chief provider of clinical care to residents of Vermont and of a large area of northeast New York.
Parent to Parent of Vermont is a statewide, non-profit, support and information network for families whose children are born prematurely or have a chronic illness or disability that specifically includes families with genetic disease. Its goal is to let families know they are not alone, that others share their feelings and concerns. Parent to Parent offers families guidance in finding resources and supports within
their communities. Its network includes over
1,400 families, and over 140 Supporting Parents who share their experiences with new families. Parent to Parent families also participate formally at the University of Vermont in the education of health care providers. As "community faculty," over 40 families share their knowledge, skills and expertise with students in medicine, early education, physical therapy, nursing, nutrition, and speech and language. Home visits required of medical students help give these families a further voice in the education of those who will deliver health care. Advocating for children with special health needs and their families is Parent to Parent’s central focus and helps guide it in developing its many programs. Fathers whose children have a chronic illness or disability gather monthly to share their concerns. Families whose children have cardiac problems meet for reassurance and support. A sibling group comes together to share their perspectives and to see that they are not alone.
The Vermont Ethics Network is a private, non-profit educational organization of professionals and lay people throughout Vermont interested in medical ethics who participate as volunteers in its work. The Vermont Ethics Network’s mission is to promote public and professional awareness and understanding of ethical issues in modern health care. The Network has served as a successful link among
public opinion, professional activities, and state policy in Vermont. Using a community-based small-group discussion format, it has conducted three public education projects: Taking Steps: Ethical Decisions for Living and Dying (1986-87); Vermont Health Decisions: Priorities for the ’90s (1989-91); and Neighbor to Neighbor: The Future of Vermont Health Care (1993).The Network utilizes existing community structures and organizations, such as church groups, PTA’s and service organizations to initiate discussions. Thirty-eight Network-trained volunteers facilitated its Taking Steps project, which focused on critical and terminal care, involving 175 groups and 3,350 individuals around the state. This project stimulated passage of Vermont’s pioneer "Durable Power of Attorney for Health Care" law, and led to the publication of a successful educational booklet on advance directives, Taking Steps. The Network has distributed over 150,000 copies of the booklet.
The Vermont Center for the Book is an independent, nonprofit organization that has brought books and book-talk to tens of thousands of Vermonters since its creation as an arm of the Vermont Library Association in 1985.
The Center trains facilitators to lead groups as diverse as adult new readers, early-childhood educators, social studies teachers and state supreme court justices in discussion about books ranging from The Three Little Pigs to The Significance of the Frontier in American History. Organizations such as General Electric’s Elfun Fund, the National Science Foundation, the Lila Wallace-Reader’s Digest Fund and the National Endowment for the Humanities fund the Center. The Center’s mission is to form and foster communities of readers who use books and discussion as tools to investigate ideas and to understand and shape the world around them. Affiliation in 1994 with the Center for the Book in the Library of Congress has allowed the Vermont
Center to make formal and informal connections with the 30 other state centers, and enabled it to develop programs of national significance.
The Vermont Regional Genetics Center is a division of the Department of Pediatrics at the University of Vermont. For over fifteen years, it has provided clinical
genetics services to
Vermont and several counties of upstate New York. Funds from the Departments of Health of both Vermont and New York help support the Center, which is the sole provider of clinical genetic services in its region. Among its services are: prenatal genetic counseling, dysmorphology and genetics evaluations at seven Vermont and three New York sites; coordination of regional prenatal "Triple Marker" screening; operation of Vermont’s newborn screening program; and a free teratogen information service through a toll-free telephone line. The Center has a long tradition of working closely with health care providers and families throughout the region to accomplish an integrated system of family-centered care for genetic conditions.
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