BENEFITING: Spastic Paraplegia Foundation, Inc.
EVENT DATE: Sep 24, 2016
Henry Chiuppi wrote -
Please help me raise money for funding research for rare diseases. Someone will walk for me on Sept. 24 in- Fremont, CA. I have Primary Lateral Sclerosis (PLS). PLS is a group of rare, degenerative, neurological disorders. PLS is caused primarily by degeneration of the upper motor neurons in the brain and spinal cord, which results in increasing spasticity and weakness of voluntary muscles. It is often referred to as a benign variant of Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s disease). The primary difference between the two is that in PLS the spinal motor neurons or lower motor neurons stay intact. Thus, there is no muscle wasting (amyotrophy), which is the symptom that ultimately causes fatal complications in ALS. The disorder usually begins in the legs but can begin in the upper body or bulbar (speech and swallowing) muscles. The age of onset is generally between 35 and 66 years of age. The incidence rate for PLS is difficult to determine. One study puts it at 500 individuals in the United States. However, many researchers feel this is inaccurate, and that the actual incidence rate is closer to 2000. Thank You!