Mission statement:

• Promote and support research to find a cure for HD;
• Help people and families affected by the disease; and
• Educate the public and health care professionals about HD.

Huntington's Disease is a fatal degenerative brain disorder that slowly destroys both body and mind. Described in 1872 by Long Island physician Dr. George Huntington, the condition came to be known as Huntington's Chorea, a reference to the dance-like, or choreic, movements which are often its most visible characteristic.
 

HD is one of the most common genetic diseases: a quarter of a million Americans have Huntington's Disease or are at risk of inheriting it.

Early symptoms may include depression, mood swings, forgetfulness, and lack of coordination. As brain cells become depleted in a part of the brain called the basal ganglia, the severity of symptoms increases. Personality changes may appear, along with decreased mental capability, slurred speech, and memory loss.

Once in the grip of HD, there is no remission: nothing can be done to slow or stop the disease's relentless course. In the final stages, the patient is toally dependent on others for all aspects of care. Death results from complications such as infection, pneumonia, or heart failure.

A Disease of Families

For generations, Huntington's Disease was regarded as a mysterious and shameful affliction. Families were stigmatized by the disease and shunned by the community. Today, however, HD is recognized as one of the more common genetic diseases.

The fact is, Huntington's Disease affects more people than hemophilia and as many as cystic fibrosis or muscular dystrophy: a quarter of a million Americans have Huntington's Disease or are at risk of inheriting HD.

Huntington's Disease affects males and females of all races and can strike at any age, though it usually appears between 30 and 50, after a person has married, had children, and passed on the affected gene.

Each child of a person with HD has a fifty-fifty chance of inheriting the Huntington's gene. Anyone who carries the gene will develop the disease at some time.

In approximately ten percent of cases, Huntington's Disease affects children or adolescents. The rate of decline among juveniles is generally more rapid and, in most cases, children diagnosed with HD will die before reaching adulthood. 

The combination of emotional, cognitive and motor symptoms in HD contributes to an unusually high cost of care. People with Huntington's Disease require care from health professionals of many stripes, including general practitioners, neurologists, social workers, home health aides, psychologists, physical therapists, and speech/language pathologists. 

In addition, those at risk may seek genetic counseling, genetic testing, psychological counseling and related healthcare services. Combined with the expense of long-term care and the impact of lost productivity, Huntington's Disease impoverishes families and places a huge burden on the nation's economy. The total annual cost of HD and related disorders is estimated at 2.5 billion dollars. 

Public and Professional Education

Public education programs are aimed at helping families cope with the effects of Huntington's Disease and increasing public awareness of HD. For professionals, the Society is a uniquely valuable source of information on methods of care and disease management.

Why HDSA Needs Your Support

Our mission compels us to do more to help families in need and to be more vigorous in our pursuit of a cure through research.

Shaping the Future

Huntington's Disease can be cured. At HDSA, we believe that, given the resources, we can accomplish our mission to wipe out this devastating disease. 

Years ago, HD families were still dreaming of finding the Huntington's gene. That dream came true in 1993. It was realized through the hard work of scientists, the support of families, and a multimillion dollar investment in genetic research. 

It will cost millions more to eradicate Huntington's Disease completely. With your help, we can accomplish this goal and shape a future that is free of HD.

With its sights on a cure, HDSA has been funding research since its inception. Over the years, the society has invested millions in genetic and neuroscientific studies aimed at unlocking the secrets of HD.

Research has provided a bright ray of hope for the future. After a ten-year search, scientists announced in 1993 that they had located the Huntington's Disease gene. This dramatic breakthrough, made possible with HDSA funds, provided critical clues to the cause of HD. It also produced a new genetic test which can accurately determine whether or not a person will develop the disease. 

Once thought unique, HD is now known to share the genetic characteristics of other 'trinucleotide repeat' disorders. Thus, resarch advances in Huntington's disease have direct implications for other neurodegenerative diseases and all those affected by them. 

With HDSA support, work goes on intensively to determine what the HD gene's normal function is, how the genetic flaw causes the disease, and how the disease process can be slowed, stopped or prevented altogether. 

YOU CAN HELP

Both funds and volunteers are needed to help the Huntington's Disease Society of America grow.
 

You can keep Brian smiling!

One of Brian's parents carries the Huntington's Disease gene. That's grim news for Brian. It means he has a 50/50 chance of developing the fatal disease. He may not show symptoms for a year, or three years or thirty. But at the moment, this is what Brian faces: 

HUNTINGTON'S DISEASE

• fatal, hereditary brain disorder 
• strikes as young as 2, as old as 80, male and/or female
• slow and cruel, 10 to 20 years of deterioration 

• involuntary movements of face and limbs 
• slurred speech 
• mood swings 

• patient suffers gradual loss of mind and body 
• family is drained emotionally and financially 
• death is inevitable, caused by secondary complications 

RESEARCH— His one and only hope—is carried along by contributions from those who care.