Online ALS Resources
The ALS Association
Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.
Muscular Dystrophy Association (MDA)
The MDA’s website contains sections on advocacy, clinical trials, support groups, research news, and more.
ALS Hope Foundation
The mission of the ALS Hope Foundation is to accelerate the search for a cure for ALS. The Foundation supports care and services at the MDA/ALS Center of Hope.
Scientific effort investigating alternative and off-label ALS treatments, while bringing together patients, clinicians, and scientists via Twitter.
ALS Forums and Chat
An open support community for people affected by ALS/MND.
ALS Information at the National Institute of Health (NIH)
Comprehensive overview of ALS provided by MedlinePlus, a service of the U.S. National Library of Medicine.
Homepage for Project A.L.S., an organization committed to actively recruiting researchers from many disciplines to work together in four main areas: Basic Research, Genetics, Stem Cells, and Drug Screening.
The goal of the Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium is to advance therapeutic development for sporadic and familial forms of amyotrophic lateral sclerosis (ALS), frontotemporal dementia (FTD), primary lateral sclerosis (PLS), multisystem proteinopathy (MSP), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The CReATe consortium aims to support this goal through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.
PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real-world and accelerate the discovery of new, more effective treatments.
Robert Packard Center for ALS Research at Johns Hopkins
The Robert Packard Center for ALS Research at Johns Hopkins is an international scientific operation dedicated solely to curing the disease. We are unique in our approach to fighting ALS, in that we combine and facilitate scientific collaboration and ALS research with fundraising for the development of new treatments and to finding a cure.
VA Biorepository Brain Bank (VABBB)
The VABBB collects donated tissues from Veterans with ALS, PLS, primary bulbar palsy (PBP), or progressive muscular atrophy (PMA). These tissues are collected, processed, stored, and given to researchers for future scientific studies on ALS. Veterans without ALS, or other neurological conditions, are also eligible to participate with the VABBB, because it can help researchers learn more about the causes of ALS.
ALS Finding a Cure
ALS Finding a Cure has created a series of videos to help ALS patients and their loved ones better understand the disease and the resources and support that will be needed as the disease progresses. In the following video series, you will hear from individuals living with ALS, their spouses, healthcare providers and professionals who shed light on the impact that this disease has on one’s life. This series will touch on some of the most common and relevant aspects of living with this illness, whether it be you or a loved one. It is our hope that these videos will empower you to be proactive about understanding and managing ALS.
Hope Loves Company
Hope Loves Company (HLC) is the only non-profit in the U.S. with the mission of providing educational and emotional support to children and young adults who had or have a loved one battling Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease.
I AM ALS
I AM ALS launched the first-of-its kind Navigation program designed as a single entry point for patients and their loved ones to learn about and access ALS resources. I AM ALS is a patient-centric movement revolutionizing how to fight disease. The Navigation program is a one-stop resource that eliminates an information gap within the ALS community and better connects patients and their loved ones to the groups already providing supportive care resources.
YCare is an evidence-based, day-long modular training skills and support program for youth who provide care to a family member with an illness.
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers.
Answer ALS is the single largest coordinated collaborative ALS research project undertaken, generating an estimated 20 trillion data-point set of comprehensive clinical, genetic, molecular & biochemical assessment of ALS from over 1000 people. The program involved over 20 institutions and 100 researchers. All data and resources generated by the program are openly shared with the global research community in line with our mission to uncover disease subgroups and ultimately end ALS.
With a singular purpose to "Leave ALS Better Than We Found It", LiveLikeLou works across North America to educate and engage ALS advocates, provide dignity, care and comfort to families living with ALS, and fund emerging scientific research to find treatments and cures. Families are encouraged to sign up for The Great LiveLikeLou Outdoor Clean-Up program here.