I have a rare upper motor neuron disorder called hereditary spastic paraplegia (HSP). For the past six years I have been involved with the Spastic Paraplegia Foundation (SPF), the only organization dedicated to two groups of neurodegenerative disorders: spastic paraplegia (hereditary and apparently sporadic); and primary lateral sclerosis (PLS). These spinal cord disorders cause progressive weakness and spasticity in the muscles of the lower body. People generally go from difficulty walking to needing a cane to eventually a wheelchair. In PLS, the disease also affects muscles in the upper body, causing problems with the arms, voice, and swallowing.
The impetus for forming the SPF was the accelerating pace of research. Dramatic breakthroughs have been made in the past decade, catapulting these conditions from being poorly understood to being on the threshold of significant treatment and cures. As both of these disorders are very rare, I would appreciate it if you would add our organization to your Resource Central section.
Annette M. Lockwood
President, SPF, sp-foundation.org