The Genetic Alliance: A History of Advocacy Organizations

Voluntary genetic associations are rooted in the history of self-help organizations, going back to the mid-1800s. Structured self-help groups evolved as immigrants arriving in the United States searched for ways to overcome feelings of isolation, language problems, and intolerance. Early on, the Pan-Hellenic Union was formed for a Greek community, and mutual help societies were organized for Jewish ghettos of major cities. Later support networks sprung up again for Hispanic, Asian, and Russian immigrants to America.

In the 1930s Alcoholics Anonymous was formed, followed by the organization of Al-Anon by wives of AA members in 1951 and Alateen in 1957 for teenaged children of alcoholics. Self-help organizations for individuals with physical and mental health concerns surfaced in the 1950s and 1960s. These included the National Hemophilia Foundation, the Association for Retarded Citizens, the Muscular Dystrophy Association of America, the United Cerebral Palsy Association of America, and the National Cystic Fibrosis Foundation.

An early self-help organization founded in 1967 by Marjorie Guthrie, wife of Woody Guthrie who had Huntington's disease, was the Committee to Combat Huntington's Disease. She was a strong leader in the self-help movement and continues to be an inspiration for family members who form self-help groups to meet the needs of others like themselves. Groups have also been founded by professionals working with consumers, such as Parents Anonymous, started in the 1970s. As a result of a national workshop under the auspices of the Public Health Service and the leadership of Dr. C. Everett Koop in 1987, Federal health and human service agencies began to include self-help in their policies and fundraising priorities.

Genetic voluntary organizations, now an integral part of the larger self-help movement, are being established both by those affected by genetic disorders and by concerned healthcare providers such as genetic counselors and social workers, often working together. Multiplying rapidly, these organizations are trying to keep pace as science races to identify particular genes and perfect technology to diagnose, treat, and prevent genetic disorders. One of the earliest organizations for individuals and families with genetic disorders is Little People of America (LPA), founded by the late actor Billy Barty in 1957. Beginning with 21 individuals of short stature, LPA now has more than 5000 members from all over the United States and a strong link to similar organizations in Canada, Europe, and Asia.

Another early genetic voluntary organization was formed the same year, the National Tay-Sachs and Allied Diseases Association, founded in 1957 by parents seeking to eradicate this rare disease and more than 20 related disorders. The National Neurofibromatosis Foundation was founded in 1978 when a patient with neurofibromatosis, the most common genetic neurological disorder, reached out to others for help. They rallied to formulate goals for the group, such as increasing research and improving public education and support services.

Many smaller networks of genetic support groups have been developing in recent years. The MPS Society (1974), for example, included several rare genetic metabolic disorders within the one organization. In 1992, the Alliance of Genetic Support Groups helped establish a network for parents of children with rare chromosomal deletions, the Chromosome Deletion Outreach Network.

The National Organization for Rare Disorders (NORD) was founded by Abbey Meyers in the mid-1980s, just before the Alliance of Genetic Support Groups was established (1986). NORD started as an informal federation of national voluntary health agencies, medical researchers, and individuals concerned about orphan diseases and orphan drugs.

In 1983, a national symposium, "Genetic Disorders and Birth Defects in Families and Society: Toward Interdisciplinary Understanding," took place in Baltimore, under my leadership when I was a social worker at Johns Hopkins. It was supported by the March of Dimes and the Mid-Atlantic Regional Human Genetics Network, Maternal and Child Health Bureau.

From this conference came the recommendation for a coalition to legitimize genetic support groups and help them become a unified force with a common purpose. It was believed that such a coalition could link voluntary genetic groups to the scientific and research communities, foster public education about genetic disorders, and provide a structure for political action.

As a follow-up to the Baltimore symposium and again with joint support from the March of Dimes and the Maternal and Child Health Bureau, a second national symposium was held in 1985, with more than 90 voluntary genetic organizations sending representatives to Washington. Sponsored by Johns Hopkins Medical Institutions and Georgetown University, the symposium focused on identifying common concerns of genetic support groups and strengthening a partnership between families and professionals involved with these groups.

Some of my colleagues and interested support group leaders joined with me to recommend the formation of a federation of voluntary genetic organizations. Hence the seed was planted for the Alliance of Genetic Support Groups. A planning committee of seven consumers and two professionals met in August 1985 to design the administrative structure of the proposed coalition, develop goals and objectives, and identify ways of funding this new federation. The Alliance of Genetic Support Groups – now the Genetic Alliance – was founded in the state of Maryland in 1986.

The Genetic Alliance is now an international coalition representing more than 300 lay advocacy organizations and health professional associations, working together to enhance the lives of everyone affected by genetics.

by Joan Weiss< br /> Founder, Genetic Alliance

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