HD-CARE is a University of California Irvine support group, 501(c)(3) Non-Profit organization, co-founded in November, 2013, by Frances Saldaña and Linda Pimental. Linda and Frances became relentless advocates for Huntington’s Disease when their lives were profoundly affected by HD.
The “HD” in HD-CARE stands for Huntington’s Disease, a progressive, inherited neurodegenerative brain disorder for which there is currently no treatment or cure. “CARE” denotes the organization’s promotion of Community, Advocacy, Research, and Education
Huntington’s Disease (HD) is a progressive, inherited neurodegenerative brain disorder for which there is currently no treatment or cure. Damaged nerve cells cause deterioration in the central area of the brain which alters movement, behavior and cognition. The ability to walk, talk, think and reason gradually erode leaving affected individuals unable to care for themselves. Huntington’s Disease presents major emotional, mental and economic impact on the lives of patients, as well as their families.
Although HD has been recognized as a disorder for centuries, the first thorough description was given in 1872 by Dr. George Huntington, a Long Island, New York physician.
HD affects both men and women, all ages and races throughout the world. While symptoms can appear at any age, signs most commonly manifest between the ages of 35 and 55. The disease can also strike young children, adolescents and the elderly. Every child born to an affected parent has a 50% chance of being born with the gene that causes HD. Those who have not inherited the gene will not get the disease and they can not pass it on to their children. HD does not skip generations.
Juvenile HD, or early-onset HD, can begin anywhere between infancy and 20 years of age. Even though Juvenile HD results from a form of the same altered gene, the symptoms are different from adult on-set HD. Individual cases of Juvenile HD vary and different children often have different symptoms.
In 1993, after a ten year search, scientists identified the defective gene that causes HD and genetic testing is now available. Given the current absence of an effective treatment or cure, many people “at risk” for HD see no benefit in knowing they may develop the disease while others want to know so they can make informed choices about their futures.
More recently, an international consortium of HD experts, including several from the Sue and Bill Gross Stem Cell Research Center at the University of California Irvine, has generated a human model of the deadly inherited gene from the skin cells of affected patients.
Additionally, individuals testing positive or “at risk” for HD can now prevent transmitting HD to their children by using a combination of In-Vitro Fertilization (IVF) and Pre-Implantation Genetic Diagnosis (PGD). Embryos are tested for the HD mutation and only embryos with the unaffected gene are transferred to the mother.
Scientific research has made great strides in understanding Huntington’s Disease. With continued investments in HD research we are encouraged that a treatment or a cure is imminent.