This Document is dedicated to the people who are or who have been affected by Huntington's Disease.
  Text by Joan Baily. Additional information provided by Eva Weissman. Editing by Marvin Gast. Joan Baily, Eva Weissman, and Marvin Gast are former trustees of the Huntington's Disease Society of America.

June 1997

The Huntington's Disease Society of America (HDSA) is a flourishing organization with chapters and affiliates across the United States. It is part of a worldwide movement and a member of the International Huntington Association, which has affiliates throughout the world.

Yet, not too long ago, the world was a very different place for people with Huntington's Disease. People with HD felt they were all alone - and they were. Alone with their families, with little professional support. labeled as victims, and often residing inappropriately in mental hospitals, they had little hope.

In 1967 Marjorie Guthrie, widow of famed folksinger Woody Guthrie who had just died of HD, began the Committee to Combat Huntington's Disease (CCHD) in New York City with other Huntington's families. A charismatic and very determined person, Marjorie traveled the country and the world, speaking, teaching, exhorting others to organize and to do research to find a cure for this disease. She encouraged young scientists all over the world to go into research for HD; she educated young doctors in medical school about the disease; she and others worked with Congress to create the federal Commission for the Control of Huntington's Disease and its Consequences; and she worked with many others to develop the fledgling organization.

What follows is a brief history of how HDSA came to be the only national organization dedicated to bettering the lives of HD families through research, education, advocacy, and family services.

PIONEERS AND UPHEAVALS: 1967 - 1985

The pioneers of the Huntington's movement in the United States are recognized each summer at HDSA's annual convention when awards are given in their name. These awards give some insight into the early days of CCHD and its history. The overall award is given in remembrance of Marjorie Guthrie and her dedication as founder of the HD movement in the United States. After her death in 1983, she was cited in the Congressional Record as a gutsy, determined person, dedicated to leading the crusade against all genetic diseases for an overall improvement in our nation's health.

The award for outstanding research is named in honor of Milton Wexler, Ph.D. After helping found CCHD with Marjorie, Dr. Wexler left to start the Hereditary Disease Foundation to focus solely on research to find a cure for HD. The discovery of the HD gene was helping immeasurably by the pioneering work of the Foundation and by Dr, Wexler's daughter, Nancy S. Wexler, Ph.D., now president of the Foundation.

The third award honors Ruby and Joe Horansky for their vision for patient and family services. In 1976, the Horanskys, with some CCHD chapters, founded the National Huntington's Disease Association (NHDA) because of differing views on how to allocate the minimal resources of the young organization. Their objective was to concentrate on improving services to families at the local level in direct ways. The emphasis on chapter social workers as well as Washington Walk on the Hill was their legacy.
 

A fourth award presented at the annual convention is named for a man who made much happen in the HD movement in a short span of time. The Dennis Shea Award honors excellence in fundraising. Dennis Shea started the Foundation for the Care and Cure of Huntington's Disease (FCCHD) and served on the board of HDSA. His Foundation has funded many family service programs of HDSA, including publications, conferences, and social worker training. In 1987, Dennis Shea instituted a series of HD dinners to raise funds for research and family services. The final dinner culminated in "The Million Dollar Dinner for HD" in 1989, dedicated to raising funds to find the gene. This was a joint venture of FCCHD, HDSA, and the Hereditary Foundation (HDF). HDSA mourns the death of Dennis Shea in 1996.

After 1976, CCHD and the newly formed NHDA each continued to fund research, help families, and educate the public. The discovery of a marker for Huntington's Disease in 1983 was a milestone for research. Many hopes were raised that the gene would be soon found. but ten long years passed until that goal was accomplished. During that time, however, the HD organizations worked together to disseminate guidelines about genetic testing. The HD marker had been one of the first genetic markers discovered through recombinant DNA research.

The duplication of staff and projects for the two national organizations soon became an obvious waste of resources for a disease of a small population such as Huntington's. Merger talks were begun in 1985 between CCHD, which by then had been renamed Huntington's Disease Foundation of America (HDFA), and NHDA.

MERGER AND CONSOLIDATION: 1986-1992

August 1986 in New York City marked the date and place on which a united national organization (HDSA) was founded. In the first few years activities were focused on organization and professionalization of service.

In 1990, when George Bush, President of the United States, signed a proclamation declaring 1990-2000 as the "Decade of Brain," Huntington's Disease was listed in the proclamation. Where formerly Huntington's Disease had been seen as a "closet" disease with a "victim," the vision espoused by the organization was to empower the person with HD, and call him or her just that, a "person with HD," emphasizing abilities, not disabilities. Various steps were taken to put this vision into practice:

• An award for "HD Person of the Year" was begun in 1990 to honor an individual with the disease who has shown courage and leadership.
• The HD Bill of Rights was formalized and distributed, urging individuals not to accept anything less than dignified treatment and care.
• More persons with HD were encouraged to attend the national convention and make their voices heard. Debates over testing, drug trials and the like have enlivened and invigorated the organization.

Since the beginning of HDSA, the national newsletter"The Marker" has brought the latest in research, education, advocacy, and family services to thousands of individuals each quarter. The newsletter became a forum for debate, for human interest stories that make the disease real to those unfamiliar with it, and to provide hope to those who are all too familiar with its consequences. In addition, publications for every group in the HD community (persons with HD, families, support group leaders, and health professionals) have appeared on a regular basis.

The annual convention has grown from an original attendance of 250 persons in 1986 to more than 600. The latest information on research, medicine, and care practices are presented to persons with HD, family members, health professionals, and the general public through workshops and public sessions. Support group meetings are also held for persons with HD, their families, and those at risk. Training for social workers has been instituted on a regular basis at the annual convention.

MOVING FORWARD: 1993-1997

Once the organization was in place and had survived an economic downfall which required some cutbacks, plans were underway for growth. In addition to ongoing funding for research, education, and family services, some of the innovations in this period include:

Programmatic:

• Increased funding for research through major bequests
• Award-winning, professionally created public service campaigns
• Vision 2000 Campaign to raise funds for growth
• Funding to Huntington's Study Group (HSG) planning for clinical trials
• Grants program to fund new chapter social workers
• HDSA web site - a link to HD resources worldwide
• Chapters founded in Kentucky, Oklahoma, Texas, Florida, and Connecticut

Organizational:

• Strategic planning, which resulted in a much more focused organization
• Leadership weekends each spring between the national trustees and chapter presidents, helping growth and direction
• Regional leadership training programs instituted
• Regional Field Director Program launched

GENE DISCOVERY AND ITS CONSEQUENCES

The announcement in March 1993 that the long sought-after gene had finally been identified was what the Huntington's community worldwide had been waiting for.

The discovery of the gene has marked a watershed in thinking about the future. While scientists can now think seriously about the probability of a treatment for HD and the possibility for a cure, the gene has also brought with it new dilemmas concerning the issues of genetic testing:

• Ethical dilemmas of whom should be tested and when
• Dilemmas concerning who will pay for testing and who should know
• Issues concerning the right to privacy concerning one's genetic information

The identification of the gene has also brought with it the need to balance optimism and caution about future research findings and promises.

PARTNERS IN RESEARCH

No HD history would be complete without saluting the National Institutes of Health and the HD families who have given generously of their time, blood, and brain tissue to participate in NIH research projects. HDSA's modest but effective grants program drew talented young investigators into the field of HD, many of whom subsequently received larger funding from NIH. With grassroots support federal financial support was garnered for neurologic and genetic research in Congress. The resulting work of NIH is particularly noteworthy.

One of its institutes, the National Institute of Neurological Disorders and Stroke (NINDS) has allocated more than $50 million directly for HD research during the past decade, as well as the additional amount of about $50 million each year for research on HD and related disorders. It was at an NINDS-funded research center in Boston that the HD gene was found, another milestone in the history of HD research.

Other elements of NIH that are and have been contributing to the HD research efforts are at the National Institute of Mental Health (NIMH) and the National Institute of General Medical Sciences (NIGMS). Playing a role in the attempt to solve HD dilemmas is another NIH element, the National Center for Genome Research (NCGR). The need to ensure federal funding for HD research has been recognized by the entire HD community.

OTHER PARTNERS IN PROGRESS

For the past thirty years, private sector support for HD organizations came from large and small individual donors as well as from corporations and foundations. Many programs were enhanced by HDSA's relationship with the Foundation for the Care and Cure of Huntington's Disease (FCCHD), the Hereditary Disease Foundation (HDF), and the Huntington Society of Canada. Certain cooperative efforts were furthered through organizational membership in the following: National Health Council, National Voluntary Health Agencies, Alliance for Genetic Support Groups, National Organization for Rare Disorders, Independent Sector, National Foundation for Brain Research, and the International Huntington Association, as well as through participation in professional and scientific societies. HDSA is well positioned to work towards accomplishing its goal: to help shape a future that is free of Huntington's Disease.

AWARD RECIPIENTS

Marjorie Guthrie Award for Service to the HD Community

1987- Dennis Shea
1988- Murray Goldstein, D.O.
1989- Samuel Baily, Ph. D.
1990- Edmond, Chiu, A.M.
1991- George and Montina Timmons
1992- Mary Louise Franz
1993- Anne Elsasser
1994- Gerald Wieske
1995- Eva G. Weissman
1996- Marvin Gast

Milton Wexler Award for Outstanding HD Research

1987- Nancy S. Wexler, Ph. D.
1988- John Hopkins Center Without Walls
1989- Anne B. Young, M.D., Ph. D.
1990- P. Michael Conneally, Ph. D.
1991- Marjorie Jensen Family
1992- Michael Hayden, M.B., Ph. D.
1993- HD Collaborative Research Group
1994- Massachusetts General Hospital
1995- Baltimore HD Project
1996- Laboratory of Molecular Neurobiology at Johns Hopkins University

Ruby and Joseph Horansky Award for Outstanding Patient and Family Services

1987- HDSA Massachusetts Chapter
1988- Bob Moeller
1989- Terence Cardinal Cooke Health Care Center
1990- Metro Care Center of Minneapolis
1991- HDSA New Jersey Chapter
1992- Foundation for the Care and Cure of HD
1993- Inez Peacock
1994- Jane Paulsen, Ph. D.
1995- HD Center at Columbia Presbyterian
1996- Allen Rubin, M.D.

Dennis Shea Award for Exemplary Fundraising

1990- Norman Barham
1991- David and Minnie Berk Foundation
1992- Scott R. Powell
1993- Paul R. Martin, Jr.
1994- Debbie Gomberg
1995- Ida Vertriest
1996- Dave Amick

HDSA Person of the Year Award

1990- Greg Barnett
1991- Barry Goldring
1992- David Potter
1993- Michael Gieras
1994- Daniel Waked
1995- Delores Gretz
1996- Kathy Nicoletti