ALS
"ALS, or amyotrophic laterals sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. "A" means no. "Myo" refers to muscle, and "Trophic" means nourishment – "No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region.
Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control. Examples of voluntary movements are making the effort to reach for a smart phone or step off a curb. These actions are controlled by the muscles in the arms and legs."
Maine Resources
MaineHealth - ALS Specialty Care Brunswick - Recognized Treatment Center offering comprehensive evaluation and treatment by specialists in neurology, nursing, physical therapy, occupational therapy, speech therapy, respiratory therapy, nutrition, and social work, with ongoing support from the ALS Association.
Regional Resources
The ALS Association - Northern New England - Serves the needs of those living with ALS and their caregivers in Maine, New Hampshire, and Vermont, providing support and resources.
Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) -
A collaborative network of ALS specialists focused on research and clinical trials to find effective treatments for ALS.
Compassionate Care ALS - Provides equipment, educational workshops, and guidance to individuals living with ALS, as well as support for caregivers.
ALS Therapy Development Institute - A nonprofit biotechnology organization dedicated to developing effective treatments for ALS through innovative research. They host events around New England.
National Resources
Muscular Dystrophy Association (MDA) - The MDA is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. They provide patient services, fund research, and advocate for individuals affected by these conditions.
I AM ALS - Offers advocacy opportunities, virtual support groups, and ongoing emotional support and logistical guidance for families impacted by ALS. They aim to empower patients and caregivers through community-driven initiatives.
Les Turner ALS Foundation - Founded in 1977, the Les Turner ALS Foundation is one of the longest-serving ALS groups in the country. Their support services team helps people living with ALS, and they offer free ALS support groups online.