These pages have been developed as communication and educational tools to help inform medical providers as well as provide pertinent insurance and family information. They may be used as a packet or as individual pages, based on individual preference and need. The electronic versions of these pages have been built as a form with fillable fields. Individuals can type their information within the pdf and save and/or print when complete.
United States of America
Living with ALS Resource Guides
The ALS Association’s Living with ALS Resource Guides were created because of the rapidly expanding information and research in the clinical management of ALS. These cornerstone educational materials were designed to inform and educate people about ALS in a comprehensive and easily understood format. They address many of the common concerns and issues that face people living with ALS.
What is ALS?
ALS, or amyotrophic lateral 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.
ALS Clinical Trials (ALS TDI)
People like you diagnosed with ALS play the most important role in the discovery and development of effective treatments and cures. Your participation in a clinical trial provides researchers with the data they need to determine whether or not a potential treatment ought to move closer to being available to all those with ALS. The ALS Therapy Development Institute is unbiased in listing clinical trials, providing information on all those enrolling worldwide. We encourage you to browse trials below and to subscribe to the clinical trial mailing list which will email you once a month with an update on changes to trials listed in this database.
ALS TDI Webinars
Each month, ALS TDI brings together researchers from our lab and others for a conversation about an important topic to patients today. These can be on a specific trial, an emerging technology, or a broad theory gaining notoriety in the effort to combat ALS. These conversations are designed to ask these researchers direct questions and to provide a place where YOU and YOUR family can speak directly to those working on your behalf at ALS TDI and other labs. These webinars are recorded, but we encourage folks to join us live as your questions and interaction with these researchers is incredibly important.