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Motor Neuron Disorders Clinic

Motor neuron disorders are a group of neurological disorders in which nerve cells that control voluntary movements degenerate. As nerve cells degenerate, patients may develop progressive problems with movements such as walking, speech, and hand dexterity. Motor neuron disorders can be inherited or acquired. The Motor Neuron Disorder clinic focuses on two disorders that begin in adult life. Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disorder. In ALS, nerve cells in the brain and in spinal cord degenerate. Researchers found that a mutation in a gene called C9orf72 may account for up to 10% of ALS in the United States. This same mutation also causes Frontotemporal Dementia (FTD). In FTD, nerve cells in the frontal and temporal lobes of the brain degenerate, causing changes in thinking, personality, and behavior. The Motor Neuron Disorder clinic sees patients with C9orf72 gene mutations to better understand the spectrum of disease caused by C9orf72. The Motor Neuron Disorder clinic also sees patients with primary lateral sclerosis (PLS). PLS is a rare, acquired disorder thought to be related to ALS. In PLS, nerve cells in the motor cortex of the brain degenerate, causing muscle stiffness and effortful movements. The causes of PLS are unknown.

If you are a patient with a Motor Neuron Disorder interested in participating in one of our research studies, please contact:

Jennifer Farren, RN  or Carol Hoffman
301-452-1229 (please leave voice mail)
301-451-9805 (fax)

OR

Patient Recruitment and Public Liaison Office toll-free at:
1-800-411-1222
TTY: 1-866-411-1010
Motor Neuron Disorders Care Providers at NIH:

Physicians

Mary Kay Floeter PhD
 
 Mary Kay Floeter M.D. Ph.D
Chief Motor Neuron
Disorders Unit, NINDS
 Bryan Traynor MD PhD
Chief, Neuromuscular Disease
Research Section, LNG, NIA

                            

Coordinators

Jennifer Farren
      Jennifer Farren RN


Research Nurse


            Carol Hoffman


Studies Actively Recruiting Patients:
13-N-0188: Natural History and Biomarkers of C9orf72 Amyotrophic Lateral Sclerosis and Frontotemporal Dementia

For more information on Motor Neuron Disorders:

http://www.ninds.nih.gov/disorders/motor_neuron_diseases/motor_neuron_diseases.htm
http://www.alsa.org/about-als/
http://www.alsconsortium.org/

Related Links:
ClinicalTrials.gov