Resources / Links

Resources for Patients:

This page not only has resources for PALS and caregivers, but also allows PALS and others to register with the National ALS Registry.  The National ALS Registry is a program to collect, manage and analyze data about persons with ALS (PALS). It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among PALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials.

Visit this site for Living with ALS Manuals, Factsheets, brochures, videos and more. 

Resources include information on Rilutek, the only medication approved by the FDA for ALS,; Doctor Discussion Guide; Communication and Mobility Support; and more.

The ALS Association – Jim “Catfish” Hunter Chapter is a Foundation partner and serves North Carolina. This link provides information on Chapter services available in North Carolina, ranging from grants to support groups.

National Registry of Veterans with ALS – enrollment stopped September 2007, however this page provides information on that initiative.


Resources for Caregivers:

Caregiving can provide a sense of satisfaction for the simple fact that you are caring for and providing for a loved one in their time of need.  It can also take quite an emotional toll.  It is important for all caregivers, who are giving so much of themselves, to take care of themselves as well.

The National Amyotrophic Lateral Sclerosis (ALS) Registry — — (800) 232-4637