Resources

As a service to the ALS community, we have assembled various resouces, including publications and videos produced by The Association, other related books, fact sheets, as well as resource guides so that you can quickly and easily access information pertaining to a variety of subjects related to ALS.

Hyperlinks to websites outside of The ALS Association are provided as a browsing convenience and do not represent an endorsement of the linked site.  

66 results
ALS Association
Youth Education
Based on subject matter-specific research, three youth education books were developed for children, teens, and young adults.
Book, Guide / Manual
ALS Association
Living with ALS at Home
A basic guide to understanding what home health care resources are available and how they can help.
Brochure
ALS Association
FYI: Breathing Difficulties
ALS varies greatly from person to person and symptoms related to your breathing can start early or much later. Weakness in the muscles of respiration (breathing) can lead to a variety of symptoms.
Factsheet
ALS Association
FYI: Medicare and Home Health Care
Medicare is a federally funded insurance plan that provides health insurance to people 65 years and older, as well as to younger people with certain disabilities and conditions (including ALS). Because of your ALS diagnosis, you are automatically enrolled in the Medicare program as soon as you begin to receive disability benefits from Social Security (or, if you were a railroad worker, the Railroad Retirement Board).
Factsheet
ALS Association
FYI: Familial Amyotrophic Lateral Sclerosis (FALS) and Genetic Testing
Most of the time ALS is not inherited. In about 90% of cases, the person is the only member of the family with the disease. These cases are called “sporadic ALS”. The cause of sporadic ALS is not well understood, but may be due to a combination of environmental and genetic risk factors.
Factsheet
ALS Association
FYI: Epidemiology of ALS and Suspected Clusters
Epidemiology is the study of factors that influence the frequency and distribution of disease, injury and other health-related events and their causes in a defined human population. These studies are done to establish programs that prevent and control the development and spread of disease and injury.
Factsheet
ALS Association
FYI: Compassionate Use Programs
"Compassionate use," officially known as expanded access, is the use of an investigational drug outside of a clinical trial to treat a patient with a serious or immediately life-threatening disease or condition which has no comparable or satisfactory alternative treatment options.
Factsheet
ALS Association
FYI: Brain-Computer Interface (BCI)
A brain-computer interface (BCI), also known as a brain-machine interface, is a system that allows a person to control a computer or other electronic device using only his or her brainwaves, with no movement required.
Factsheet
ALS Association
FYI: ALS, Cognitive Impairment & Dementia
Although cognitive and behavioral symptoms were documented in patients with ALS-type motor neuron disease in the late 1800’s, many of us were trained that ALS, and motor neuron diseases in general, do not impact thinking and behavior. Within the last 10 years, there has been a convergence of research on ALS clinical symptoms, neuro-radiographic patterns of pathology, and genetics that have shed important light on the association between motor neuron disease, cognition, and behavior.
Factsheet
ALS Association
FYI: Suggestions and Information about Speech Changes & Augmentative Alternative Communication (AAC)
Changes in speech are common with ALS and progress over time. Learning about and implementing timely strategies and proactive steps will enable you to maintain optimal communication. Beginning work with a speech therapist (i.e. speech language pathologist or SLP) familiar with ALS at the earliest sign of speech or voice changes, and even prior to changes, can be invaluable. In this article we look at what causes speech and voice changes and the important steps to take at various stages of ALS to insure you can communicate effectively.
Factsheet
ALS Association
FYI: Managing Excessive Saliva
Patients who experience swallowing problems often notice that they seem to salivate more. The fact is, they may not be salivating more, but the saliva is pooling in the mouth because of an inability to swallow it. Excessive saliva can be one of the most frustrating symptoms of ALS to manage. It can also be life threatening, since it frequently causes choking, especially at mealtimes when saliva secretion is increased and chance of aspiration is greatest.
Factsheet
ALS Association
FYI: Information About Feeding Tubes
A feeding tube is a small, flexible tube, about ¼” in diameter that is an alternative route for nourishment and hydration.
Factsheet
ALS Association
FYI: Respite
Respite is a service that provides family caregivers with time away from their caregiving responsibilities. Everyone needs “me” time to relax and reboot - this is especially true for family caregivers, who are often stretched thin emotionally as well as physically by the increased demands illness places on the family. Respite gives the caregiver a chance to meet his or her own needs, which benefits both the caregiver and the care recipient.
Factsheet
ALS Association
FYI: Glutamate Research Could Lead to ALS Treatment
Decades of research on the neurotransmitter glutamate have produced promising results that could lead to treatment for Amyotrophic Lateral Sclerosis (ALS). Scientists believe excessive exposure to glutamate may be one of the reasons that nerve cells (motor neurons) die in ALS. Preventing the rise of glutamate levels could be the key to protecting motor neurons and impeding the progress of the disease.
Factsheet