Policy & Advocacy: Health Awareness / Nursing Leadership
June is ALS Awareness Month!
The ALS Society of British Columbia
provides direct support to ALS patients, along with their families and caregivers, to ensure the best quality of life possible while living with ALS. They achieve this through their equipment loan program and other direct supports, fundraising for services and research, and increasing public awareness and understanding of ALS.
To help address the needs of patients and promote quality of life for people affected by ALS, the ALS Society of BC works and collaborates with other organizations including: ALS Centre at GF Strong Clinic, Provincial Respiratory Outreach Program, Communication Assistance for Youths and Adults, and the BC Association for Individualized Technology and Supports for People with Disabilities (BCITS).
connects every day with people who are living with ALS and supports them in their journey. They see firsthand the tremendous burden of the disease – physically, psychologically and financially. The realities of ALS are harsh – and they reinforce the need for better government support and access within the healthcare system.
ALS Canada engages with federal and provincial governments to represent the voices and experiences of people living with ALS and to advocate for policy changes and funding that will have a meaningful impact on people living with ALS today and in the future. They also engage at the local level with health care providers and agencies to help the people we support access services and other resources that can lessen the burden of living with ALS.
What is ALS?
ALS, also known as Lou Gehrig’s disease, is a group of rare neurological diseases that are progressive and usually fatal. ALS causes gradual degeneration of the motor neurons responsible for controlling voluntary muscle movement. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.
Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles. Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord and to motor nuclei of brain (called lower motor neurons) and from the spinal cord and motor nuclei of brain to a particular muscle or muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to fasciculate, and atrophy. Eventually, the brain loses its ability to initiate and control voluntary movements.
Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe.
Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10% of people with ALS survive for 10 or more years.
Join us at the Walk to End ALS in a community near you!