Vanderbilt Autonomic Dysfunction Center [ web site ]
Consortium investigators from Vanderbilt University represent the Departments of Medicine, Neurology, Pharmacology, Biostatistics, Pediatrics, Biomedical Engineering, and Genetic Medicine as well as the Center for Molecular Neuroscience. Investigators at Vanderbilt became interested in studying autonomic cardiovascular regulation in the late 1920s with Clay M Greer’s development of extensive experimental evidence that norepinephrine rather than epinephrine was the primary sympathetic neurotransmitter in mammals. In 1978 Vanderbilt investigators established the Autonomic Dysfunction Clinic (ADC) as the first international center for patient care, research, and training focused exclusively on disorders of the autonomic nervous system. Early leaders of this Center included David and Rose Marie Robertson and Italo Biaggioni. These investigators elucidated new pathophysiologies of autonomic disorders and introduced novel therapies for their treatment.
NYU Medical Center, Dysautonomia Center, Department of Neurology [ web site ]
In 1969, the Dysautonomia Treatment and Evaluation Center was established at New York University Medical Center with the specific mission of providing medical care to patients with Familial Dysautonomia (FD), a debilitating genetic disease that affects autonomic and sensory nerves. The center was supported by the Dysautonomia Foundation (DF, Inc), a charitable not-for-profit organization established in 1951 by a group of parents. In 1985, the Autonomic Disorders Research and Treatment Program was established at the Department of Neurology of Mount Sinai School of Medicine as a comprehensive center committed to research, education and patient care. Investigators at the program reported the first complete neuropathological description of PAF. The Dysautonomia Center at New York University was established in 2007 when these two preeminent medical facilities combined under the leadership of Horacio Kaufmann, MD and Felicia Axelrod, MD. This union resulted in one of the most comprehensive medical facilities of its type exclusively dedicated to research and treatment of both genetic and sporadic disorders of the autonomic nervous system in children and adults.
National Institute of Neurological Disorders and Stroke [ web site ]
David Goldstein, MD, PhD, has been investigating brain regulation of the cardiovascular system for about 40 years. He joined the NIH as a Clinical Associate in 1978. His single-authored report on whether essential hypertension features high plasma levels of norepinephrine has been cited over 500 times. He was one of the first to validate liquid chromatography with electrical detection (LCED) for measuring levels of catecholamines in human plasma. He developed and applied approaches for estimating the rate of entry of norepinephrine into the venous drainage of the arm and later the heart. Goldstein and his group reported the first neuroimaging evidence of loss of cardiac sympathetic nerves in PD, especially PD with orthostatic hypotension, in contrast with MSA.
Beth Israel Deaconess Medical Center [ web site ]
Roy Freeman, MD is the Director of the Center for Autonomic and Peripheral Nerve Disorders at Beth Israel Deaconess Medical Center, Harvard Medical School, a nationally recognized diagnostic and research laboratory that evaluates both common and rare autonomic and peripheral nerve disorders. Dr Freeman and his colleagues and collaborators have developed and refined techniques, including time and frequency domain measures of heart rate, blood pressure, cerebral flow, cutaneous blood flow control, baroreflex function and sudomotor function. They have harnessed these techniques to understand the pathophysiology of diabetic peripheral neuropathy, the autonomic neuropathy of HIV infection and amyloid neuropathy, MSA and PAF. Building on work carried out by the Vanderbilt Autonomic Group and in collaboration with Dr Horacio Kaufmann in projects sponsored by the FDA orphan drug program and NORD, they have carried out mechanistic and therapeutic studies with the norepinephrine precursor, droxidopa, to treat neurogenic orthostatic hypotension. This agent is now in a multicenter clinical trial.
Mayo Clinic [ web site ]
Dr Low was introduced to autonomic nervous system disorders about 1970. He has been a leader in the development of quantitative tests and instruments to evaluate autonomic function. He invented the quantitative sudomotor function test. He also helped develop the thermoregulatory sweat test. Additionally, he developed and validated tests of cardiovagal and adrenergic function, combining them into a composite autonomic reflex screen. These tests have been used at the Mayo Clinic to intensively evaluate the heterogeneity of POTS, its natural history and treatment options. Over ten years ago, Dr Phillip Low and his colleagues successfully launced the nation’s first Autonomic Disorders Program Project which has been continuously funded by the NIH. This program is focused on elucidating the pathophysiology of autonomic failure /dysfunction and developing novel therapies.
PATIENT SUPPORT GROUPS
National Dysautonomia Research Foundation [ web site ]
With the shift in clinical interest toward milder and more diverse disorders like orthostatic intolerance or POTS, Mrs Linda Smith of Red Wing, Minnesota, recognized the need for a patient support group for the relatively young individuals suffering from this condition. This lead to establishment of the National Dysautonomia Research Foundation (NDRF) in 1998. The NDRF website has subsequently been the major clearinghouse for information about autonomic disorders on the internet.
The Multiple System Atrophy Coalition [ web site ]
The Multiple System Atrophy Coalition was originally named the Shy-Drager MSA Support Group. To improve communication among patients and physicians caring for them, Mrs. Dorothy Trainor-Kingsbury and Vanderbilt’s Autonomic Dysfunction Center joined forces in 1989 and organized the Shy-Drager Support Group. This group included a network of patients with autonomic disorders and their caregivers. In April 1995, the Shy-Drager Mail List was established at Vanderbilt, allowing patients and caregivers to communicate their concerns and experiences to each other via the internet. The Shy-Drager Support Group continued under the leadership of Mr. Don Summers until his retirement in 2010 and Vera James and Judy Biedernharn were elected as the new co-Presidents. In January of 2013, the Board voted to change the name of the SDS/MSA Support Group to The Multiple System Atrophy Coalition™ or The MSA Coalition™, for short. Today, the MSA Coalition is executing its new mission by supporting educational initiatives to help physicians make an earlier diagnosis, participating in Capitol Hill events to raise awareness for MSA and Rare Disease issues, leading and participating in MSA Awareness Month activities, and building a substantial MSA Research fund to eventually find a cause and a cure for Multiple System Atrophy.
Dysautonomia Foundation, Inc [ web site ]
The Dysautonomia Center at New York University Medical Center works in close collaboration with the Dysautonomia Foundation, a public charity founded in 1951, shortly after familial dysautonomia (FD) was first identified in the United States. The foundation is the main supporter of the Dysautonomia Center. The Dysautonomia Foundation provides a continual flow of information to families, the medical community and other lay and professional persons who request medical, educational or promotional material concerning FD.
Dysautonomia Information Network [ web site ]
The Dysautonomia Information Network (DINET) is a non-profit organization founded to help people with dysautonomia. Although their main focus is on POTS and neurocardiogenic syncope, they also reach out to patients with PAF and MSA. DINET provides educational information to physicians and patients, moderates an online forum and helps to bring together patients with similar disorders and physicians interested in treating them. Since 2003, DINET has published an online newsletter to distribute the latest findings in research and treatment.