What Matters Most to Huntington’s Disease Patients? New Survey

Symptoms and treatments that most impact the lives of patients and their caregivers reported in the Journal of Huntington’s Disease

January 23, 2017 - Huntington’s disease (HD) has no cure and no therapies to slow the course of this fatal disease. HD patients can experience a wide range of cognitive, physical, and psychiatric symptoms. In an effort to gather the perspectives of both HD and Juvenile Huntington’s disease (JHD) patients and their caregivers, the Huntington’s Disease Society of America (HDSA), in conjunction with the U.S. Food and Drug Administration (FDA), conducted two surveys. The first assessed symptoms and their impact on daily life and the second gathered opinions about current approaches to treating HD. Insights gained as the result of these surveys are published in the current issue of the Journal of Huntington’s Disease. More...

January 23, 2017

Meditation and music may help reverse early memory loss in adults at risk for Alzheimer’s Disease

January 23, 2017 - In a recent study of adults with early memory loss, a West Virginia University research team lead by Dr. Kim Innes found that practice of a simple meditation or music listening program may have multiple benefits for older adults with preclinical memory loss. More...

January 23, 2017

Targeted Therapy for Sleep Disorders Helps Patients with Muscular Dystrophy

Treatments Most Effective When Matched to Symptoms, as Reported in the Journal of Neuromuscular Diseases

January 17, 2017 - Myotonic dystrophy type 1 (DM1) is the most common adult muscular dystrophy, and many patients with DM1 suffer from various sleep and respiratory disorders. In a study in the current issue of the Journal of Neuromuscular Diseases, researchers found that because there is wide range of sleep problems, treatments do not fit a “one size fits all” model. More...

January 17, 2017

Not All Europeans Receive the Same Care for Duchenne Muscular Dystrophy

Researchers Report Significant Regional and Age-Dependent Differences, in the Journal of Neuromuscular Diseases

January 3, 2017 - Duchenne muscular dystrophy (DMD), a progressive muscle disease affecting one in 3800-6300 live male births and leads to ambulatory loss, respiratory problems, cardiomyopathy, and early death of patients in their 20s or 30s. While incurable, multidisciplinary treatment can raise life expectancy into the fourth decade. However, in a survey across seven European countries, researchers found striking differences in access to appropriate care. There were significant inequities between different countries and different age groups, which would likely lead to different health outcomes. More...

January 3, 2017