A new full-service patient care and clinical research center for people with a relatively rare and disabling brain disorder will be launched at Johns Hopkins with initial support from a $450,000 National Ataxia Foundation (NAF) grant funded by the Gordon and Marilyn Macklin Foundation. Gordon and Marilyn Macklin were members of the Chesapeake Chapter of the National Ataxia Foundation, which was instrumental in the development and funding of the center.
An estimated 150,000 Americans currently have some form of ataxia, a baffling ailment marked by a varied constellation of symptoms including unsteady walk, a tendency to stumble, slurred speech, abnormal eye movements and difficulty swallowing and with fine-motor tasks such as holding a fork and buttoning a shirt.
"Because the underlying causes and types of ataxia differ, and because there is no specific, direct therapy for it, the best approach for patients is a one-stop comprehensive center that combines a variety of specialists, equipment, clinical trials of new treatments and programs to manage and minimize symptoms that affect the quality of life," says Sarah Ying, M.D., assistant professor of neurology and ophthalmology at the Johns Hopkins University School of Medicine. "We believe we are poised with this new center to make meaningful changes in patients' lives, and this grant will also accelerate our search for treatments that can diminish the suffering and disability of thousands."
Inherited or acquired as a result of infection, injury, stroke and other diseases, ataxia has consequences that depend largely on which part of the brain is affected. Damage to some parts of the cerebellum translates to disorders of gait and stance, for example, whereas damage to other areas of the cerebellum result in impairment of fine finger movements. Other forms result in an inability to stabilize visual images, and can be associated with prominent vertigo, nausea and double vision.
Ying says the Johns Hopkins Ataxia Center will focus on introducing innovative technologies. Also, each patient's case manager will coordinate appointments among speech, physical, and occupational therapists, neurologists, ophthalmologists, otolaryngologists, pulmonologists, and psychiatrists.
Source: John Hopkins