Huntington's disease (HD), also known as Huntington's chorea, is an incurable neurodegenerative disease that is mostly inherited. The earliest symptoms are often subtle problems with mood or mental/psychiatric abilities. A general lack of coordination and an unsteady gait often follow. It is also a basal ganglia disease causing a hyperkinetic movement disorder known as chorea. As the disease advances, uncoordinated, involuntary body movements of chorea become more apparent. Physical abilities gradually worsen until coordinated movement becomes difficult and the person is unable to talk. Mental abilities generally decline into dementia, depression, apathy, and impulsivity at times. The specific symptoms vary somewhat between people. Symptoms usually begin between 30 and 50 years of age, and can start at any age but are usually seen around the age of 40. The disease may develop earlier in each successive generation. About eight percent of cases start before the age of 20 years, and are known as juvenile HD, which typically present with the slow movement symptoms of Parkinson's disease rather than those of chorea.
The American College of Physicians (ACP) is a Philadelphia-based national organization of internal medicine physicians, who specialize in the diagnosis, treatment, and care of adults. With 161,000 members, ACP is the largest medical-specialty organization and second-largest physician group in the United States. Its flagship journal, the Annals of Internal Medicine, is among the most widely cited peer-reviewed medical journals in the world.
Gregory Stock is an American biophysicist, best-selling author, biotech entrepreneur, and the former director of the Program on Medicine, Technology and Society at UCLA’s School of Medicine. His interests lie in the scientific and evolutionary as well as ethical, social and political implications of today's revolutions in the life sciences and in information technology and computers.
The Alliance for Aging Research is a non-profit organization based in Washington, D.C., that promotes medical research to improve the human experience of aging. Founded in 1986 by Daniel Perry, the Alliance also advocates and implements health education for consumers and health professionals.
Sidney Verba was an American political scientist, librarian and library administrator. His academic interests were mainly American and comparative politics. He was the Carl H. Pforzheimer University Professor at Harvard University and also served Harvard as the director of the Harvard University Library from 1984 to 2007.
Journal of the Physical Society of Japan (JPSJ) is a monthly, peer-reviewed, scientific journal published by the Physical Society of Japan (JPS). It was first published in July 1946. The editor-in-chief was A. Kawabata until August 2010. The impact factor for JPSJ in 2017 is 1.485, according to Journal Citation Reports.
Data sharing is the practice of making data used for scholarly research available to other investigators. Many funding agencies, institutions, and publication venues have policies regarding data sharing because transparency and openness are considered by many to be part of the scientific method.
The Huntington's Disease Society of America is a US non-profit organization dedicated to improving the lives of those affected by Huntington's disease, an incurable, genetically transmitted degenerative disease of the nervous system that affects movement, thinking, and some aspects of personality.
The Triple Negative Breast Cancer Foundation is a nonprofit organization dedicated to raising awareness of triple negative breast cancer. The foundation supports scientists and researchers in their efforts to determine the definitive causes of triple negative breast cancer so that effective detection, diagnosis, prevention, and treatment can be pursued and achieved.
The Society for Scientific Exploration (SSE) is a group committed to studying fringe science. The opinions of the organization in regard to what are the proper limits of scientific exploration are often at odds with those of mainstream science. Critics argue that the SSE is devoted to disreputable ideas far outside the scientific mainstream.
The American Society for Bone and Mineral Research (ASBMR) is a professional, scientific and medical society established in 1977 to promote excellence in bone and mineral research and to facilitate the translation of that research into clinical practice. The ASBMR has a membership of nearly 4,000 physicians, basic research scientists, and clinical investigators from around the world.
Gillian Patricia Bates FMedSci FRS is a British biologist. She is distinguished for her research into the molecular basis of Huntington's disease and in 1998 was awarded the GlaxoSmithKline Prize as a co-discoverer of the cause of this disease. As of 2016, she is Professor of Neurogenetics at UCL Institute of Neurology and the co-director of UCL Huntington's Disease Centre.
Charles Edward Sabine is a British television journalist who worked for the US Network NBC News for twenty-six years, before becoming a global spokesman for patients and families with degenerative brain diseases. He is active throughout advocacy and charity sectors across four continents and founder of the Hidden No More Foundation. He has 2 children, Roman and Sabrina.
The Hereditary Disease Foundation (HDF) aims to cure genetic disorders, notably Huntington's disease, by supporting basic biomedical research.
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). IFOPA's mission is to fund research to find a cure for FOP while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide. IFOPA is governed by a volunteer board of directors which may range in number from 9 to 15, at least one of whom must have FOP. The association's location is 1520 Clay St., Suite H2, North Kansas City, MO, 64116, part of the Kansas City, Missouri metropolitan area.
Jeffrey Bryan Carroll is an American scientific researcher in the field of Huntington's disease (HD). As a carrier of the abnormal gene that causes HD, he is also a public advocate for families affected by the disease, and co-founder of the HD research news platform HDBuzz. His life and work were the subject of a 2011 Gemini award-nominated CBC documentary feature. Carroll is an associate professor of neuroscience in the Department of Biology at the University of Washington
Elena Cattaneo is an Italian pharmacologist and co-founding director of the University of Milan's Center for Stem Cell Research.
Edward Wild, also known as Ed Wild, is a British neurologist and neuroscientist in the field of Huntington's disease and an advocate for scientific outreach to the public. He co-founded the Huntington's research news platform HDBuzz in 2010. He is a professor of neurology at UCL Institute of Neurology and is an associate director of the UCL Huntington's Disease Centre. He is also a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London.
