Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, affects nerve cells in the brain and spinal cord. While ALS can be debilitating, resources and treatment advances can assist in prolonging survival and in helping people maintain independence for as long as possible. If ALS affects you or someone in your life, keep a list of resources available to you at your fingertips.
ALS Association
The ALS Association is a nonprofit organization that provides information about types of ALS, its symptoms, diagnosing and treatments for the disease. The association's website has information for health-care providers such as practice standards as well as free videos and patient information available to order. Family members will find details about local support groups, certified centers and clinics, as well as information about communication and assistive technology. The association also provides lists of adaptive devices and equipment resources to help aid ALS patients. The website contains an area devoted to current events and research regarding ALS and treatment advances. Caregivers will also find instructive videos they can watch online.
Robert Packard Center for ALS Research
The Robert Packard Center for ALS Research at Johns Hopkins University has awarded more than $16.5 million in research grants related to ALS and provides current information about treatment advances and ongoing research and clinical trials. The center's website allows visitors to access information about diagnosis, symptoms, treatment, medical classifications, facts and statistics of the disease. The site also contains links to online communities and other ALS-related websites.
International Alliance of ALS/MND Associations
This alliance was founded to provide a forum for exchange between ALS associations around the world. It disseminates information, promotes research and aims to improve quality of life for people affected by ALS and motor neuron diseases. The group's extensive resource library has publications available on various topics of ALS, and the alliance gives you access to articles, booklets and other materials in different languages from around the world. You can search for information by country of origin or by language. The website also has policy documents about best practices, advanced directives and alternative treatments. The Latest News section on the website has information about recent treatment findings.
ALSTDI
The ALS Therapy Development Institute is a nonprofit biotech company founded by patients that focuses on development of therapies for ALS. Its website provides a search for family resources by location. You have access to family web pages, where you can locate others in your area who are affected by the disease. The group's online forums feature topics such as treatment, advocacy and tips for living with ALS. Podcasts are available regarding current events, research and therapies. You can also sign up on the website to receive a free newsletter devoted to ALS issues.
